Jaylie – 1yr 2 weeks – Vigabatrin Day 3

I apologize I have not been able to write an update until now. Things have been very busy both due to the holidays, Jaylie’s first birthday and the Infantile Spasms treatment.

Despite Dr’s orders, we HAD to have a very small celebration for Jaylie’s first birthday. Jaylie’s party was very small but perfect. Here are a couple pictures:






Thank you everyone whom contributed to Jaylie’s first birthday! She had a fantastic time. We will never forget it! Thank you SO much!

We have stopped the ACTH treatment. It has been a bitter sweet departure from ACTH. Though the ACTH suppressed Jaylie’s immune system, caused extremely high blood pressure and major swelling, ACTH really jump started Jaylie neurologically. On ACTH Jaylie’s seizures stopped, started eating orally, sitting up, holding a bottle and feeding herself, rolling over, stopped spitting up and overall a lot more alert.

Since tapering off the ACTH Jaylie has digressed a bit. Jaylie has had a couple of seizures, though not as intense as before and not on a daily bases. Jaylie has stopped eating orally parting because we started giving her some medication orally she really does not like and partly because we have stopped the ACTH. Jaylie has also started spitting up, though not at the same level as before the ACTH she has started spitting up again. Though Jaylie has digressed a bit, she is still doing well and progressing forward.

One of the positive things that also came out of the ACTH use was we were able to transition Jaylie of the nightly feeding pump to just feeding her throughout the day, yay!

Due to the ACTH not completely stopping the seizures and not resolving the abnormally EEG patters the neurologist has started another treatment Vigabatrin (Sabril).

Vigabatrin does not have the same side-effects ACTH does and can be used as a long term treatment unlike ACTH. Long term use of Vigabatrin can cause permanent loss of peripheral vision though this vision side-effect does not happen within all patients it is a possible side-effect. The Dr will know if the Vigabatrin is effective within the first 2 weeks of use. We are currently on day 3 of the Vigabatrin treatment.

These last couple of weeks have been bittersweet - bitter with Jaylie’s regression, sweet with making it to Jaylie’s first birthday and first Thanksgiving.

We are looking forward to the next couple of weeks. Looking forward to having Jaylie’s first Christmas as home and looking forward to seeing positive results with the continuation of Jaylie’s Infantile Spasm treatment.

Please keep Jaylie in your prayers. We are praying Jaylie’s growth and development will continue to move forward, that the Infantile Spasms treatment is effected in stopping these seizures and normalizing Jaylie’s neurological patterns.

Thank you SO much for all your prayer and support! We could not do this without your prayer and support!

Merry Christmas!

Nathan, Kristina and Jaylie

Jaylie - 11 months 3 weeks - ACTH day 36

Jaylie has been happy and active this week. Jaylie has had a couple of mild seizures but nothing major and even more important, Jaylie is not having seizures on a regular nor daily bases.

Though Jaylie is doing well, she still has an abnormal EEG pattern and intermittent seizures associated with Infantile Spasms. What this means is we need to try another method to bring the EEG patterns and seizures under control. There are several options available to address the irregular EEG patterns and IS (Infantile Spasms) related seizures. The two of options we are looking at are Vigabatrin and the ketogenic diet. Any medication approaches we take to address IS will have serious, some being permanent, side-effects. You can read about all the currently documented medications and treatments for IS here: Infantile Spasms (BTW, this link is the most comprehensive site on Infantile Spasms I have found thus... )

We meet with the neurologist on Monday to discuss the next steps treatment steps we are going to take to treat the IS Jaylie is experiencing.

Jaylie's blood pressure is still high, high enough to be seen several times a week by the Dr's and to have to take two different blood pressure medications daily. Though Jaylie's blood pressure is high, it has come down just a coupe of points over the last weeks which is good. We are slowly decreasing the amount of ACTH we are giving Jaylie daily. I believe we have roughly another week of the ACTH and then we are done. If you recall, the pulmonary Dr advised the ACTH has roughly a two week ramp-up period before the individual starts to experience high blood pressure. The pulmonary Dr also advised it takes the same amount of time (roughly two weeks) for the high blood pressure side-effect of ACTH to ware off. So hopefully these blood pressure issues we are battling right now will be complete resolved three weeks from now.

We reach a major mile stone this Thursday. This Thursday will be Jaylie's first birthday! Can you believe it!

It's been 64 weeks (roughly 1 year and 2 months) since the Dr's advised Jaylie's placenta was failing and she most-likely would only last a couple more days and then pass away. Well, here it is 434 days later and Jaylie's very much alive, growing, learning, maturing, developing and living! Within the last +400 days, we have witnessed true miracles and awe-inspiring gifts from God! The icing on the cake being we get to celebrate Jaylie's 1st birthday on Thursday - is that amazing or what!?! God it good! Thank you Lord!

Jaylie's immune system is still suppressed due to the ACTH and so we are not able to do the typical things you would do for a 1 year birthday party but just the fact we have made it to this point is worth celebration is whatever capacity available!

Jaylie is making good progress with eating on her own, making noises, rolling over, sitting up and other motor skill movements.

Jaylie is currently 16 lbs 10 oz.

Over all this last week has been a good week. We are coming to the close of the ACTH treatment and are pleased with the overall results we have experienced thus far.

Please keep us in your prayer as we continue on with treating Infantile Spasms (IS) and working with Jaylie's growth and development.

Thank you all for your prayers and support! They are greatly appreciated and needed!

Happy Holidays!

Nathan, Kristina and baby Jaylie

Jaylie - 11 months 2 weeks - ACTH day 27

We are back up at Swedish for another 24 hour EEG. The Dr's are monitoring Jaylie to see if she is still having seizures form IS (Infantile Spasms). Jaylie has been doing this little shaking thing sometimes, and with the Dr's having to cut the dose of ACTH several days before the Dr's were planning to, the Dr's are concerned Jaylie did not get enough ACTH soon enough to completely stop the IS. So the Dr's have decided to do a 24 hour EEG watching Jaylie to see if there is anymore seizure activity going on. 

Depending on how today's EEG goes will determine if we need to change our IS treatment strategy or continue down the path we currently are on. Our current path is to wean Jaylie off the ACTH, meticulously watch for seizure activity and take a oral medication to help keep any seizure activity at bey. 

Jaylie's blood pressure has gone down today, yay! The Dr said there is usually a two week lag in regards to ACTH affecting Jaylie's blood pressure. If I understood the Dr correctly, this two week lag would explain why Jaylie's blood pressure shot up all the sudden and also why it has taken some time for her daily blood pressure to come down. We have to be consistent in giving Jaylie her medication and over time (roughly 2 weeks after we stop the ACTH completely) these blood pressure issues should subside.

We started weaning Jaylie off the ACTH the tuesday before last. The weaning process invokes cutting the by 25% each week until we are at a low enough amount to completely stop. Right now we are on the second week of weaning. We have another week, or two or three more of weaning Jaylie off the ACTH before we can stop the ACTH all together.

Jaylie has gotten really swollen while on the ACTH. So much so people who don't know Jaylie think she is a boy because her face has gotten round and her jaw very square *sigh*.

Jaylie's swelling has started to come down but is still significant. 

Jaylie is 16 lbs and 27 inches long now.

Jaylie will be 1 year old in less than 2 weeks - can you believe it!

As always, thank YOU so much for your prayers and support! They are a life saver for us! We really appreciate them all...

Nathan, Kristina and baby Jaylie

Here are a couple of pictures from today:

Jaylie - 11 months 1 week - Day 22 of ACTH injections

There has been quite a bit of activity in Jaylie and our lives since I last posted. The most eventful event being another stay at the hospital due to Jaylie's blood pressure being dangerously high and her behavior being despondent. The Dr advised these signs are very dangerous and that we would need to start lowering the ACTH does right away, which means Jaylie's chances of having the Infantile Spasms come back are a lot higher. And if the infantile Spasms come back we will have to start another set of treatments of which have additional side affects, some being long term like permanent loss of peripheral vision...

Needless-to-say this last week was more than challenging... It would firmly be placed in the low category (some days high, others low).

The good thing is Jaylie is back home again. She is almost back to her normal self though still really puffy and now taking two more medications to keep her blood pressure in check. 

We are now in the process of weaning Jaylie off of the ACTH.

Thank you so much for your prayer and support, it has been much needed and much appreciated!

Nathan, Kristina and baby Jaylie       

Jaylie - 11 months - Day 15 of ACTH injections

Jaylie is 15 lbs 14 oz and 25 ½ inches long. She is doing really well, happy, healthy and growing!

Jaylie had her follow up EEG yesterday. This EEG was the best EEG we’ve had so far. The nurses whom performed the EEG were great and we were out of there in record time, 45 minutes! After we went to the EEG appointment we headed over to the neurologist to have the neurologist take a look at the EEG and examine Jaylie to determine if the ACTH treatment is working or not. The neurologist was really pleased with Jaylie’s development on the ACTH. The Dr said she DID still see some slight abnormal brain activity, the same activity that is a contributing factor to IS (infantile spasms), and so the Dr would like to keep Jaylie at the maximum ACTH treatment for the next 10 days, then start to wean Jaylie off of the ACTH steroid. The Dr advised the weaning off process takes a couple of weeks (2-4 weeks). The Dr also advised Jaylie immune system would continue to be compromised for 4-6 weeks after we stop the ACTH (so if you’re doing the math that puts us at 6-10 weeks more of Jaylie’s immune system being compromised). The Dr advised due to the type of brain activity she is seeing, Jaylie will be at risk for seizures even after she is off the ACTH and therefore will start an anti seizure medication after we stop the ACTH. The Dr advised Jaylie may grow out of the seizure risk category but at least for the next 2 years she will need to take this anti seizure medication.

This info is a mixed bag for us. We are still processing it all.

On one hand we are completely ecstatic with the results we’ve seen! Jaylie eating food, rolling over, sitting up and developing is awesome, a direct answer to prayer!

On the other hand, Jaylie’s first birthday is less then a month away, Thanksgiving just after that, Christmas following shortly-there-after, all of which falling within the 6-10 weeks during which Jaylie immune system will be compromised meaning we CANNOT take Jaylie out to socialize with friends nor family this WHOLE holiday season. Not being able to take Jaylie out this whole holiday season and having to be hyper sensitive to cleanliness, not being around sick people and keeping Jaylie from being exposed to ‘bad stuff’ is a burden by itself. Add having to do this during Jaylie’s first birthday, her first Thanksgiving home and her first Christmas home and it becomes even more of a load to carry – in other words it just plain sucks…

The Dr acknowledged going through this process and having to care for Jaylie with a compromised immune system during this time of year does suck but it is necessary. This treatment affects the rest of Jaylie’s life and the overall quality of life Jaylie will have. A couple months of seclusion is a small price to pay to ensure Jaylie has the best quality of live possible.

A couple of things we will be praying for Jaylie for are: continued growth and development, complete healing from IS, 110% developmental recovery, complete protection while Jaylie’s immune system in compromised.

Thank you all SO much for your prayer and support!

Nathan, Kristina and baby Jaylie

Jaylie - 11 months - Day 10 of ACTH injections

Jaylie is doing well, still eating like a big girl and has been pretty much event-less (no visible signs of seizures).

This is day 10 of the ACTH injections.

We have our first follow up visit with the neurologist on Friday. During the visit to the neurologist on Friday, they will do another 1-2hr EEG where they will monitor Jaylie's brain activity to see if her brain activity is still showing signs of seizures.

We have had to take Jaylie in to her regular pediatrician for follow up visits a couple of times since we started the injections to have her blood pressure and blood sugar level - all is well so far.

Jaylie's progression this last week has been amazing! Praise God!

As these times are wonderful and memorable, I am reminded of the wisdom our primary Nurse in the NICU gave us the first day we arrived. She said "Your journey here is going to be full of peaks and valleys -- Really high highs, and really low lows". This wisdom has continued to be played out in our lives. Two weeks ago we were at a really low low and now today a really high high.

We thank and Praise God for the high highs and getting us through the low lows!

Being locked up in the house (due to Dr's orders in not exposing Jaylie to the work due to her compromised immune system) we were not able to church on Sunday so I turned on the TV and looked for a good church service to watch. I ran across this one #478 – Mountain Moving Faith by Joel Osteen. This message spoke right to my heart, encouraged me and reminded me how effective faith in Christ is!

Thank you all so much for your prayer and support it is a live saver!

Nathan, Kristina and baby Jaylie

Jaylie - 10 months 3 weeks - Day 7 of ACTH injections

Jaylie is still progressing very well on the ACTH steroid. It’s like the steroid has kicked her development into overdrive, woot woot! The neurologist has advised these IS (Infantile Spasms) seizures may have been going on for quite a while of which may have been stunting Jaylie’s development. Since Jaylie started the ACTH she has grown and developed leaps and bounds! It’s pretty awesome to witness.

Literally overnight, Jaylie has decided she wants to eat everything in site! This coming from a kid whom has shown almost no interest in eating anything her entire life. Now we can’t stop her from eating! She wants to eat all the time and eat everything! Check her out:

http://www.facebook.com/video.php?v=449328114188

We are still seeing very slight seizure activity. The neurologist has advised she would like to see absolutely NO seizure activity at all before starting to wean Jaylie off of the ACTH, so this means we will most-likely be on ACTH for at least another 2 weeks (one more week at a higher dose to kill the seizures and another week of weaning Jaylie off the ACTH).

Please continue to keep us in your prayers. Jaylie immune system is high compromised while she is on ACTH and with flu season just around the corner we need God’s projection from being exposed to day-to-day life. We are doing the very best we can to limit our exposure to sickness, viruses, bacteria, ect but ultimately need God’s protection to keep us all safe and Jaylie healthy, developing and recovering.

As always, thank you all so much for your prayer and support! It works and is appreciated!

Nathan, Kristina & baby Jaylie

Jaylie - 10 months 3 weeks - Day 5 of ACTH injections

Jaylie is doing really well on the ACTH so far and really well over all considering. If you recall, I wrote advising our prayer for Jaylie was during this time not only would the medication be affective in treating IS (Infantile Spasms) but that God would provide Jaylie a 110% recovery -- well I can say God answers prayers! Not only is Jaylie doing very well on the ACTH medication thus far (with the spasms decreasing more and more each day) Jaylie is developing over all!

Over the last week Jaylie has decided she wants to sit up now, drink from a bottle and scream all of which she was NOT doing last week!

Here's a bottle holding video (I will spare you from the screaming video) :

http://www.facebook.com/video.php?v=448452784188

Please continue to pray with us as we continue on with this treatment.

Jaylie has been really fussy (a known side effect of ACTH) but is really blossoming.

Our prayer is Jaylie would continue to heal, grow and develop through this time. And that we all would stay healthy, not get sick and not suffer any setbacks if possible.

Thank you for your prayer and support!

We could not do it without you!

Nathan, Kristina & baby Jaylie

Jaylie - 10 months 3 weeks - Day 3 of ACTH injections

We are on day 3 of giving Jaylie the ACTH shot each morning. Jaylie is responding well so far. Her seizures seem to be less frequent and less intensive. 

Part of the side effects of the shots are irritability of which WE are definitely experiencing.

I have to say, injecting Jaylie with the ACTH gel is a slow painful process for all. Giving these injections to your own child is the worst experience I've had so far. 

Going through all these events this last week has been extremely taxing on all of us exacerbating the cracks and imperfections in us. Your prayers and support are priceless!

People ask how we make it through these times, I immediately respond stating we would not have made it through these times without the love, prayer and support of our support group, our friends and family ( all of you! ). You all have really made an irremovable impact on our lives, thank you!

I've mentioned this before ago but feel it is worth mentioning again, Kristina's mom has been an absolute live saver! Debbey has a gift for dealing with children and additionally a gift for children that have special needs. Debbey has many priceless years of experience working with children to over come adversities. Debbey's impact on Jaylie's life has been profound. We are appreciative of the work Grandma Debbey does with Jaylie on almost a daily bases. Being new parents we have no idea what we are suppose to be doing. And being parents of a child that needs extra special care as our first child puts us at an even more of a disadvantage. Debbey's experience and support has been a true God send for us. Debbey has gone above and beyond the role of Grandma and has propelled herself into Super Grandma status! Thank you Debbey! We love you!     

Debbey is only one of the many people ( both friends and family ) that have provided us and continue to provide us support. 

Thank you all! We do see and acknowledge your giving and sacrifice for Jaylie. Thank you thank you thank you!

Nathan, Kristina and baby Jaylie 

 

Jaylie - 10 months 3 weeks - Starting IS treatment

We went into Swedish yesterday (Thursday) to have Jaylie's MRI done.
We (along with the Dr's) were hoping the Dr's would be able to use a
light sedative to keep Jaylie sedated while the MRI was performed...
Well, Jaylie had other plans for us. They started the sedative and
started the MRI but partway through they had to stop because Jaylie
was not cooperating. Jaylie started moving around which is a no-no in
an MRI. Fortunately they were able to reschedule the MRI just an hour
or so later with heavy sedation and inbutation but, what this meant
was we had to stay another night in the hospital while they allowed
Jaylie to recover from the sedative and remove the breathing tube
inserted for the MRI.

Now, if you are counting we were in the hospital Monday, Tuesday,
Wednesday, Thursday and Friday of this week. I got no more than 3
hours of sleep at a time before I would have to get up and attend to
something, welcome to parenthood Nathan...

Rewind a couple of days from today to Wednesday, to add more favor to
our already boring lives, the neurologist came back into the room on
Wednesday and advised the ACTH drug was not going to be covered by
insurance and the the cost per vial would be $30,000 and that Jaylie
would need 4 vials total amounting to +$100,000 out of pocket. At that
moment in time I can say I started to feel a level of panic. We were
advised this treatment was the best possible treatment for our
daughter but now the desperately needed treatment seamed completely
out of reach, there was no way we could pay $100,000 for medication. I
asked the Dr to check again and see what could be done. She agreed and
went off and checked again. The neurologist came back and said the
insurance company would cover part of the cost but ultimately it would
end up costing us $3,000 per vial for a total of $12,000 out of
pocket, she then went on to advise there were other treatments we
could try that would be more cost effective if we had too. The
neurologist advised she would continue to look into the costs and get
back to me, in the mean time I went down to the in house pharmacy to
pick up the medications we needed right away to take Jaylie home.

While I was at the pharmacy picking up the medications and going
through the routine of having the pharmacists explain how to take the
medications properly the pharmacists explained he had this other
prescription he was working on filling, the order for the ACTH. The
pharmacist was excitedly concerned because as he explained it was
$30,000 a vial and he had to get like four levels of upper management
approval to even order the medication. The pharmacists advised even if
he were able to get the approval he would not be able to get the
medication until Monday. Jaylie and I left the hospital not knowing as
to whether we were going to be able to start the recommended treatment
for Infantile Spasms or not...

Fast-forward to now, in another display of Gods grace and favor, we
find out after all the right people talked to each other our insurance
would pay for the ACTH needed and that the vials would be sent to us
over night. We received the vials next day as promised. Is God awesome
or what!

With all that said and done, all the meds have been received and the
tests completed. We are on track to start the ACTH medication Saturday
morning. We have throughly sanitized the house thanks with my moms
help, thanks mom! We will start the ACTH medication at 5am Saturday
morning.

There are some serious side effects of ACTH, the most prevalent being
a compromised immune system.

Please keep us in your prayers!

We need safe passage through this time of Jaylie's immune system being
compromised and for the ACTH medication to permanently stop the
infantile spasms with little or preferably no negative impact to
Jaylie.

As always, thank you all for your love, prayer and support!

YOU are priceless!

Nathan, Kristina and baby Jaylie

Jaylie - 10 months 2 weeks -- ER Visit -- Day 3 -- Infantile Spasms Diagnosis

So we have completed the 24hr EEG test of which has confirmed Jaylie
does have Infantile Spasms. What this means is we need to start
treatment for Infantile Spasms (seizures) right away. The treatment we
are going to start is a drug called ACTH. ACTH is a steroid used to
control the seizure activity. One of the major draw backs for ACTH is
it severely cripples the immune system. While Jaylie is on ACTH we can
have absolutely no contact with sickness, viruses, ect which means we
will have to scrub down the house, all her toys and live in seclusion
for a couple of weeks while the medication is administered.

Before we can start the ACTH treatment Jaylie has to have an MRI done
and a tuberculosis test done. We've started the TB (tuberculosis) test
today. The TB test takes 48 hrs to complete, so on Friday we meet with
Jaylie's pediatrician whom will read the TB test. If the TB test goes
well, we will start the ACTH injections on Friday.

ACTH is not a cure for Infantile Spasms but a treatment to stop the
devastating seizures. ACTH just recently (within the last two years)
was FDA approved for Infantile Spasms treatment. ACTH does not work
for everyone. ACTH typically takes 1-4 weeks to stop the spasms
(seizures). If the ACTH is not effective in stopping the spasms we
will need to try other treatment options. We are hopeful and praying
the ACTH will stop these destructive seizures.

Please pray with us that the treatment of the Infantile Spasms Jaylie
is having will be thorough, expedient and effective, bring about a
complete stop to these seizures and a 110% developmental recovery. If
these spasms continue they are likely to cause serious cognitive
development issues (mental retardation).

You can read more about IS (Infantile Spasms) here:
Infantile Spasms

West Syndrome (aka Infantile Spasms)

Here is a National Public article on Infantile Spasms CLICK HERE (Thanks Sis!)



As always, thank you so much for your prayer and support!

Nathan, Kristina and Jaylie

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

Jaylie - 6 months old

Jaylie went in for her 6 month check up this week and all is well. Jaylie is 8lb 6oz now (3798 grams) a far cry from the 545 grams she was born at just 6 months ago...

We are still working with Jaylie doing developmental stuff. We have an occupational therapist coming out to the house each week and working with Jaylie. We have follow up exercises to do with Jaylie each day to help with development. Jaylie is still behind developmentally wise but catching up.

We are still feeding Jaylie through her feeding tube and have made little progress with bottle feeding. The Dr's advise in a month or so we will be able to start with solid food feedings.

Jaylie is in size 0-3 months now, just outside of her preemie closes.

I was able to experience a random without waring projectile vomit all over my shirt today...

Things overall are progressing well :)

Please continue to keep us in your thoughts and prayers. Please pray for Jaylie's overall development and that we as parents will be able to follow God's direction in making the daily decisions that affect Jaylie's life and development.

Thank you all for your prayer and support! We really appreciate it!

Nathan, Kristina & Jaylie

Couple pictures from today:

Jaylie - 5months 2weeks 2days

So you're probably thinking, "How's Jaylie doing!?". She is doing well! She's just just 8lbs now and it growing well. Kristina, Jaylie, me and grandma Debbey are still adjusting to our new lives but wouldn't have it any other way!

Jaylie has had ton's of Dr's visits and still has many more to go.

Jaylie's Gtube has caused her some pain and irritation around the site of insertion but a couple of visits to see the gastrointestinal Dr's to clean up the insertion area has helped a lot.

The only area that we've gone a bit backwards in is with the oral feeding. Jaylie has decided she longer wants anything in her mouth ever -- no pacifier or bottle. This has made bottle feeding impossible.

We met with the Occupational therapist's this week and they are going to start working with Jaylie weekly to help with development overall, specifically focusing on the areas Jaylie is behind in like the bottle feeding and such.


Please keep Jaylie's development, growth and maturity in your prayers.

As always, thank you SO much for your pray and support!


Nathan, Kristina & Jaylie


Here are some pictures from the last couple weeks:

Trip to the Tulip Festival

Jaylie - 5 months old today

Hello, it's been awhile since I've posted a new blog. We (Kristina, myself, jaylie and our friends and family) are getting use to the new norm, Jaylie being home now!

Kristina's mom (Debbey) is helping us with daycare as Kristina and I continue to work. Debbey is awesome and a life saver, a priceless blessing! Debbey's love for children, love for Jaylie and willingness to help us with Jaylie is another awesome testament to God's never-ending faithfulness and love for us. Though all children are special, due to Jaylie's medical history, Jaylie requires more individualized care. Debbey enrollment in our lives is a true answer to prayer. Thank you Lord! Thank you Debbey! We love you :0)

The day to day life with Jaylie has been good. She's still on the feeding tube and has not made much progress feeding via the bottle but is growing and maturing well. Please keep Jaylie's developmental needs in your prayers.

Jaylie is 6lbs 8oz. She is growing and changing tons each day.

Jaylie got her first head cold about a week ago after taking her to her first dr's visit. Though it was not too serious, it scared Kristina and I because it affected her breathing a bit in the morning and at night. The discharge nurse told us that if Jaylie started to have any breathing problems that we would need to rush her to the hospital right away, so Kristina and I were a bit on edge when Jaylie started to get congested with a head cold. Praise God Jaylie's head cold did not last but a couple of days!

We've take a couple of pictures of Jaylie over the last coupe of weeks and have posted them here: April

We went to the tulip festival for the first time today. The weather was perfect and so were the tulips! You can very some uber cute photos from today's outing here: Tulip Festival

Pray needs: Kristina and I are still figuring out the ropes as parents. Please keep us in your prayers. Please also continue to pray for Jaylie's development physically, mentally and spiritually. We pray that the Lord would continue to manifest His presents in Jaylie's live. We pray Jaylie's development would be expedient and complete, above and beyond her years.

As always, thank you so much for your prayer and support! We love you all! We would not have been able to make it this far without your prayer and support...

Sincerely,

Nathan, Kristina & Jaylie

Jaylie - New Beginning - Welcome home! (4months 1 week 1day)

Jaylie is home!


Is that amazing to say or what!?!

It's hard to put into words the significance of Jaylie actually being cleared to leave the hospital and come home. It is a moment in life that feels to good to be true - a true testament of a miracle manifested before our eyes the very moment we walked out the front doors of the hospital. A true moment when falling on your knees and worshiping God is the only true justice one can do for a moment like this.

If you think about it, 1 year and 1/2 ago, Kristina's Dr's advised if she did not take steps to become pregnant right away or have surgery she would be putting her life in jeopardy due to an extreme case of endometriosis. 6 month later Kristina and I embarked on the extreme roller coaster ride know as In Vitro Fertilization (aka IVR) to try and conceive due to medical challenges. The IVF roller coaster was extremely costly mentally, emotionally, physically and financially.

5 months after starting the IVF roller coaster ride, Kristina and I were very encouraged to hear the process was a wonderful success in all ways possible, we thought we were in the clear and would become normal parents in 9 months or so.
5 months after we found out Kristina was pregnant one of the best and highly experienced Neonatologist (along with 5 other highly qualified Dr's) in WA advised the best Kristina and I could have hoped for would be for Jaylie to survive in Kristina's womb for a couple of days and then Jaylie would most-likely pass away due to the placenta not providing Jaylie what she needed - one Dr even mentioned the option of abortion...

At this moment in time both Kristina and I have invested a tremendous amount of time energy, prayer and finances into this pregnancy - the news advising our new baby would be lost would be devastating to any new parents. With our history to this point receiving this news was just short of earth shattering. For me personally, the threads of hope I could hold on to were the assurance God would never leave us nor forsake us and knowing the IVF process had gone so well. If it was God’s will for Jaylie to pass, we could start all over again.

I am a very logical person. I do believe in the word of God, His power and His promises. I do believe in miracles and God's ability to do miracles. Looking at all the circumstances logically, I knew the chances Jaylie would survive would be about the same a hitting the lottery - sure it happens, but do you know anyone personally that has won the lottery? So, being the logical person I am, we started preparing for the most logical outcome, Jaylie passing, but with the caveat we will give God every opportunity to work a miracle in our lives, believing in His power, and believing if it be His will He would provide us a miracle.

At the point Kristina and I received the news Jaylie most-likely would not survive, we turned her life over to God and prayed that His will be done in all of our lives - this really was the only logical decision to do. If Kristina and I tried to carry this burden on our shoulders we would have been destroyed by it.

Fast-forward to now… After 130 days in the hospital, Jaylie is in good health and at home safely! Amazing eh!?! Before this experience I could not say I have seen a miracle before my very eyes. I can now say I’ve seen a miracle come to life before my very eyes.

He is risen!

Thank you all for your love, prayer and support. It has truly paid off!

This miracle we now are the proud parents of would not be possible without your prayer and support. You have truly given us a gift we cannot repay!

We love you all!

Sincerely,

Nathan, Kristina and Jaylie





Here are a couple of video's:

Jaylie - Day 126 - 4months 5days old

Quite a bit has gone on since the last time I posted. The Dr's have moved Jaylie from the PICU to the Pediatric floor because she is doing so well and does not need the PICU support anymore. The Dr's advised she may be able to come home as earlier as this Saturday, that would be awesome! We received word today Jaylie's release date has been pushed out a couple of day into next week some time, but we are getting close woot woot! The have started the discharge paperwork, so we are inching closer and closer to Jaylie finally coming home!

It's truly a miracle we've made it to this point! Awesome huh!?!

Jaylie is right around 5lbs 14oz now.

As always, thank you SO much for your prayers and support, they have truly worked to get us this far. We still have a long road ahead of us. Jaylie is still uber tiny for her age and will need help with development and growth.

Nathan, Kristina & Jaylie

Here is a picture from about 5 days ago:

Jaylie - Day 118

Well this week was a pretty crazy week. Jaylie had a bunch of test done before going into surgery, then went into surgery on Friday.

All the tests went well. The reconnection surgery and g-tube insertion surgery also went well.

The only major change was during surgery the NICU Dr in charge decided, based upon the large amount of new babies they had arriving, they were going to move Jaylie from the NICU to the PICU (Pediatric Intensive Care Unit).

While this move is a blessing, it was/is SUPER stressful for Kristina and I because this change in location is a MAJOR shift in the daily routine for Jaylie's care and the primary person overseeing Jaylie's daily care. In the NICU you have a nurse that is assigned to over see your care and make sure everything is followup on and that your baby is well taken care of. In the PICU there is no such concept of a single person that is responsible for the care of your child -- this is a major shift for Kristina and I. What this means is Kristina and I are now the sole responsible people for ensuring all of Jaylie's medical background, like's and dislikes, communication of what is 'normal behavior' and communicating all the unique attributes about Jaylie to the nurses and Dr's is our responsibility as her parents now. While we as parent gladly take ownership for these responsibilities, it was quite upsetting to be told within a matter of hours we were the new subject matter experts that would need to communicate with the new nursing staff and Dr's concerning Jaylie instead of going back to the NICU as scheduled. This news was not only upsetting to us, it was also upsetting to the nurses whom where expecting Jaylie to come back after surgery to finish-up her recovery and prepare to go home.

The PICU is a good place. There are a lot less restrictions in the PICU compared to the NICU. The PICU is geared towards parents being the primary care taker with support from the nursing staff when needed. Jaylie has her own room now. We can visit and/or stay with here 24/7 now.

Jaylie is recovering well now in the PICU. We hope to be leaving the PICU (and the hospital) by the end of the month is all goes well.

Jaylie is right around 5lbs 6ozs now.

This weekend we finally got around to remodeling Jaylie's room. Kristina and her mom (and all other friends and family not mentioned) did a great job in picking out colors, paint and 'STUFF' to make the room really special and unique. The room has turned out amazing! I'll post pictures as soon as Kristina gets to see the final product. Kristina left a bit early tonight to go spend the night with Jaylie while her mom and I finished up some final touches on Jaylie's room.

As always, thank you SO much for your prayer and support!

We could not do it without you!

Nathan, Kristina and Jayile

Here is a picture from Friday's surgery:

Jaylie - Day 110 - week 43 2/7

This week is a big week for Jaylie. We had our second care conference with the Dr's and nurses last week. During the care conference the decision was made to perform Jaylie's ileostomy reversal surgery (were the close up the loop of bowel they opened up with the first surgery). The decision was also made to implant a gtube ( Gastric Feeding Tube) to administer Jaylie's feeds post surgery because Jaylie is not able to take full feeds via a bottle yet. Jaylie is scheduled for her reversal surgery this Friday the 12th. While the surgeon is performing the reversal surgery the surgeon will put in the G-tube as well.

The will be a 5 or so day recovery period form the surgery, then the Dr's and nurses will work on getting Jaylie back up to full feeds (post surgery they will take Jaylie off of feeds for about 5 days). After Jaylie has recovered and is taking full feeds well they will the let her come home! YAY!

Jaylie has a bunch of tests the Dr's are going to perform in prep for the reversal surgery this Friday -- Jaylie has a busy week this week.

Please keep Jaylie's surgeries in your prayers -- a quick and healthy recovery would be awesome! :)

Please also keep Jaylie's development (specifically around her being able to take full bottle feeds asap and her ability to swallow, breath and suck all at the same time) in your prayers.

Jaylie is coming along great! We've still have a hurtles to overcome. The next hurtles are more long term growth and development hurtles.

Jaylie weight right around 2400 grams now which is right around 5lbs 4oz :).

As always, thank you SO much for your prayer and support!

We Love you all!

Nathan, Kristina & Jaylie

Jaylie - Day 101 - week 41 6/7

Over the last 10 days Jaylie has been doing well.

Jaylie is up to just about 4lbs 14oz :).

The lower bowel refeedings have being going well.

Jaylie did have to go on the nasal cannula for a couple of days to give her a bit more oxygen but is off the oxygen now.

The last couple of visits Jaylie has been a bit fussy which is a new experience for us but a good sign she is growing and maturing like little babies do :).

We meet with the surgeon tomorrow to discuss the reconnection surgery for Jaylie's lower bowel.

We are vastly approaching the 44 week mark at which they usually kick you out of the NICU.

Though the Swedish NICU is a great facility with awesome staffing, Kristina and I are really looking forward to not having to visit them each day...

As always, thank you so much for your prayer and support!

I will post some new pictures asap.

Nathan, Kristina & Jaylie

Jaylie - Day 90 - week 40 2/7

This last week has been a good week. Jaylie has grown in size and weight. Jaylie is now +1900 grams = 4lbs 3ozs, yay!

The Dr's are talking about doing the contrast tests again of Jaylie's intestinal track to see if everything is moving through in a healthy way.

This week Jaylie had a some stool in her diaper (which is a good thing). That means the lower intestinal track is functioning somewhat, as to how much it is functioning the Dr's will test over the next week by GI contrast tests and if those go well the Dr's will start refeeding (refeeding is not a subject for the faint of heart. To read some context on what refeeding is and how it's done you can read these nurses comments: refeeding) to engage the lower intestinal track to see how the lower intestinal track is behaving. If all goes well (refeeding and testing) the surgeon will reform another surgery to reconnect the ileostomy. There were be a 10 day or so recovery period after the surgery, after the recovery, if all goes well, Jaylie would then be able to come home yay! There are ALOT of if's in there, but overall things are going well. Jaylie is growing and maturing.

As always, thank you so much for your pray and support! It it appreciated beyond words!

Nathan, Kristina and Jaylie

I have posted some new pictures from this week: HERE .

Here is a picture from this week:

Jaylie - Day 82 week 39 1/7

This week was better than last week for the Jaylie. Jaylie is doing a lot better than last week. Her stomach swelling is all pretty much gone, yay!

Jaylie is tolerating her feeds really well, but is not putting on weight and actually losing weight (keep in mind, Jaylie is only using her upper digestive track to process feeds due to the ileostomy surgery ). Jaylie is down to 1600 grams (3lbs 8.3oz). Becaus of this weight loss, the doctors have put Jaylie on a predigested formula to hopefully help Jaylie start putting on weight. Hopefully Jaylie will start to put on weight with this new formula.

Other than the weight issues (which is a serious issue) Jaylie is doing well! We are able to hold and interact with Jaylie which is awesome!

The week before last was a tough week for us. Jaylie's surgery and the Doctors setting expectations with us as to what to expect regarding Jaylie's care after we get her home were taxing events to process and recover from. Kristina and I are still recovering from those events.

Jaylie's prayer requests:

Intestinal development
Overall development and grow

As always, Thank you SO much for your prayer and support! We really appreciate it!

Nathan, Kristina and Jaylie

Here is a video and picture from this week:





Jaylie's Feb pictures: HERE

Jaylie - Day 75 - week 38 1/7

Today we went to visit Jaylie and attend a 'Care Meeting' scheduled by the nurses and Dr's to go over Jaylie's current condition and to go over what to expect we Jaylie comes home.

I am happy to say today's visit went really well. Jaylie is off the ventilator and started feeds today! That's crazy good! AND Jaylie is in an open bed breathing room air on her own (AWwwWESOME)!

Kristina got to hold Jaylie for a couple of hours today. Jaylie was really sensitive to touch due to the surgery this week and coming off anesthesia. After fussing for a bit, Jaylie settled down enough for Kristina to hold her for a couple hours which was really good for mom and Jaylie, yay!

After Kristina held Jaylie for a couple of hours, we went and got some coffee then met with the nurses and Dr's to have a 'Care Meeting'. During this meeting the nurses and Dr's advised us of Jaylie's current conditions, what to expect concerning mid-term goals and what to expect long-term.

Jumping to long-term goals, the Dr's explained Jaylie is an uber small baby. The Dr's explained only 1 out of 3 babies born at 5XX grams survive, so for Jaylie to survive and do well is AMAZING! The Dr's continued on to explain, with Jaylie being so small, most babies born this small have developmental 'troubles' in life. I asked what the Dr's meant by 'troubles', they explained 'troubles' meant possible mental cognitive delays, physical growth delays and usually fine motor skill delay's. The Dr's explained these delays can be minimized by starting to see an occupational therapist as soon as Jaylie gets home. The Dr's continued to advise one of the better occupational therapy centers is just down the street from where we currently live (isn't God awesome!). We discussed some deals around what to expect long term and went over Jaylie's growth chart a bit. Here is Jaylie's current growth chart:



Looking at the chart above, the little dots towards the bottom of the graphs is where Jaylie's numbers fall. Jaylie's numbers are way below the normal percentile ranges, but that is ok because we serve and AWESOME GOD whom has blessed us with amazing miracles so far! We believe He will continue the good work He has started in Jaylie :)

Moving on to the immediate and mid-term goals.

The short term goals is to get Jaylie going on feeds and putting on some healthy weight. The pediatric surgeon would like to double her weight from 1500 grams to 3000 grams. The pediatric surgeon hopes to double Jaylie's weight (hit the 3000 grams number) within a couple of weeks (2-4 weeks or so). Then, after Jaylie has put on a good amount of weight using the upper intestine track and the stoma, the surgeon will be looking to test and hopefully reengage the lower intestine, then close up the stoma, then let Jaylie rest a bit after the stoma closing surgery, then send Jaylie home! If things go perfectly, the surgeon advised we could probably be taking Jaylie home in mid March.

The Dr's completed the MRI for Jaylie and it came back looking good. The Dr's said they could see where there had been a previous bleed (when Jaylie was first born and had a major setback) and how the bleed has healed. The Dr's said they did not see any problems at all with Jaylie's MRI.

Summary, today was a really good day, the end of another episode and the beginning of another period of growth and recovery. We received good news from the Dr's confirming all the tests done (biopsy's included) came back negative and Jaylie's is shining like a super start with her recovery.

Kristina and I are looking forward to getting back to helping Jaylie grow and mature instead of stressing about tests and stuff. We are relieved and excited to see what God has in store for us these coming weeks.

Pray requests: If you would like things to pray for you here are a couple of things Jaylie will have to overcome:

1) Jaylie's long term developmental growth
2) Physical size (being smaller than all the other kids her size)
3) Mental cognitive development
4) Upper and lower intestine health
5) Bladder health
6) Growth and maturity
7) Guidance for Kristina and I as parents help us see and make the right decisions
8) Guidance for the Dr's, nurses and Jaylie's care takers that they would see and make the best decisions for Jaylie as well

Of course, I'm sure you all can see and think of other things not mentioned above, those are the quick things I can see and think of at the moment.

As I've mentioned several times already, Kristina and I are supper ready to be done with this week and are ALL the way ready to start a new BETTER week :).

As always, thank you SO much for your prayer and support! We really appreciate it!

Nathan, Kristina & Jaylie

PS: Thank you ALL for those that participated is Kristina's baby shower this last Saturday, she loved it! You all did a great job, thank you!

Jaylie - Day 74 - week 38

YAY! This week is almost over! Praise the Lord! ForReal!

Jaylie is recovering well from her exploratory surgery this week. She's progressing nicely. The Dr's are planning to start feeding Jaylie possibly today based upon her recovery.

There was a scary this week during Jaylie's recovery when Jaylie started shaking and not stopping. The Dr's ordered anti-seizure medication right away. As soon as the Dr ordered the medication Jaylie stopped shaking. Because of this shaking event, the Dr's ordered a round of test to look at Jaylie's brain to check to see if the shaking was seizure related or if there was any other brain issues going on. The first test was an EKG where the Dr's found brain activity that if continued for longer than 10 seconds would be considered seizure activity but this activity the Dr's were seeing only lasted for 3 seconds at a time. Based upon the EKG test results, the Dr's decided to order an MRI.

So, I'm guessing you're wanting to know where we stand on all the tests and what the Dr's are thinking eh? You're in luck, I have then answers :).

I asked the Dr's this week what the short term and long term plan for Jaylie was and were we sat in regards to the surgery, tests and biopsy's completed this week. The Dr's advised all the tests came back negative for any disease or sickness (good news). The Dr advised they were planning to take Jaylie off the ventilator and start feeding withing the next day or so as long as they could get the MRI scheduled and completed. The Dr's advised to complete the MRI they needed to keep Jaylie on the ventilator and would most-likely have to give Jaylie a small sedative during the MRI. The Dr's then advised the rest of the details around Jaylie care were being determined by the pediatric surgeon.

I was able to talk to the pediatric surgeon to gain perspective and what the Dr's were thinking around Jaylie's condition, what their plan was to treat the condition and what the plan was going forward. The Dr's advised the condition they believe Jaylie has is called 'Sudo Bowel Blockage' meaning, her lower bowel swells up and acts like it's blocked but the bowel is not blocked. The surgeon advised the current course of action is to use the upper intestine to grown Jaylie to around double her current weight (1500 grams), then perform some tests on her lower bowel to see if the stoma can be reversed and the lower bowel reengaged for use again. The Dr's and I discussed a lot of gory details around how they will go about testing the lower bowel for use of which I will spare you :).

There are a lot of scenario's the Dr's and I discussed as to what could happen (with Jaylie intestinal issues), ultimately the Dr's are not sure what is going to happen but believe Jaylie is in the larger percentile for all of these issues to work themselves - though there is always the possibility the challenges Jaylie is currently facing could turn into life long issues. I personally believe and have faith Jayile will make a FULL recovery!

This week has been a challenging week to say the least.

Jaylie is recovering well and growing. Jaylie weights 1729 gram = 3lbs 13oz now.

As always, we truly appreciate your prayer and support! Thank you SO much!

Nathan, Kristina & Jaylie

Jaylie - Day 70 - week 37 3/7 (surgery post op)

The Dr's were able to fit Jaylie into surgery today. The Dr's have completed the exploratory surgery recommend and Jaylie is recovering currently. The Dr's did NOT find any conclusive evidence or condition that would conclusively explain why Jaylie's stomach has been so descended. What the Dr's DID find is Jaylie's lower bowel is extremely swollen and not working the way it should -- as to why it's not working the way it should the Dr's are not sure of. The Dr's took several biopsies of the lower bowel and colon to test for disease and infection though they are not convinced there is any disease or infection. The surgeon decided to perform a loop ileostomy on Jaylie to give the lower distressed bowel and chance to recover an heal. The surgeon said she did not see any unhealthy bowel or dead bowel. You can read more about ileostomy HERE.

The Dr's have advised Jaylie will have a stoma for the next little while buying time for the lower bowel to heal (Yes 'little while' is vague time frame. The Dr's have not been clear as to how long Jaylie will have a stoma -- based upon yesterday's conversation with the Dr's, Jaylie may have a stoma any where from a couple of days to a couple of months).

The Dr's have advised the biopsy results should be back by Thursday.

Jaylie is resting now and doing well.

We will keep you posted as to what is to come. There will fore sure at least another surgery to close up the stoma if no other issues are found.

As always, thank you SO much for your prayer and support!

Nathan, Kristina & Jaylie

A picture from before the surgery:

Jaylie - Day 69 - week 37 2/7

I've been trying to get an update out but have obviously failed to do so until now. Things have changed quite a bit over the last couple of days. The Dr's originally advised they did not see anything abnormal with the Upper and lower GI's completed, therefore they were perplexed as to what was going on and started to explore other possible diseases, one of which being a colon biopsy to test for a nerve disorder.

The Dr's advised last Friday they were going to let Jaylie rest through the weekend and do a colon biopsy first thing Monday morning (today). We got a call from the Dr's early this afternoon advising they decided not to do the colon biopsy after additional review of the xray's and GI tests done. The Dr's advised they were seeing something in the xray's which may be causing the swelling and bloating of Jaylie's stomach and would like to do another Upper GI before looking into any other possibilities. We agreed to another Upper GI test which was completed this afternoon. The results from the Upper GI show there is a small loop of upper intestine which is twisted 180 degrees. This intestinal twist is reducing the flow through Jaylie's bowel. I don't remember if I have mentioned it or not but Jaylie has had an descended (swollen) stomach pretty much from birth. The Dr's and nurses advised Jaylie's stomach being descended was a common problem premature babies experience, and can be caused by a myriad of different issues, most of which premature babies can just grow out. With today's findings, (In my opinion) the most likely cause of Jaylie's stomach being descended (swollen) this whole time is due to one of Jaylie's intestine loops being partly twisted causing a partial blockage. This blockage is still allowing stuff to pass through, but is keeping from flowing through as fast as it should, which is cause a blockage, which is causing swelling, which then causes breathing problems and-so-on-and-so-forth. This partial intestinal twist is called Intestinal Malrotation. You can read about Intestinal Malrotation HERE.

Based upon today's findings, the Pediatric surgeon has suggested exploratory surgery to determine how much, if any, damage has been done to the intestine due to the partial twist. The exploratory surgery finding will range from no intestinal damage to damaged intestinal section which would have to be surgically removed.

If during the exploratory surgery the surgeon finds no damage to the intestinal track, the surgeon will untwist the bowel then stitch Jaylie up. The recovery time for this option would be 3-4 days -- this would be the best case scenario.

On the flip-side, if the surgeon's find damage to the intestinal track sever enough that it cannot be repaired, the procedure is to remove the section of track that is damaged. If a section of intestinal track has to be removed, the Dr's will assess as to whether the now disconnected intestinal track can be immediately reconnected or if the track needs time to heal before being reconnected. If (yes this is A LOT of if's...) the Dr's decided to leave the intestinal track disconnected to allow for healing, the Dr's will route the two parts of the intestinal track into a bag outside of the stomach. The recovery time for this scenario could be 8 weeks or longer.

To summarize, based upon the surgeon's finds tomorrow, Jaylie's recovery time could be any where from a couple of days to a couple of months.

As you can imagine, that last 10 days or so have been difficult to deal with. Kristina has had a really tough time because she hasn't been able to hold Jaylie because Jaylie is back on the ventilator. The Dr's advised us early on there would be ups and downs and this is definitely a down.

We are relieved to be on a path to treating this problem which has been plaguing Jaylie for a while but also apprehensive of what is to come.

We will make sure to keep you up to date as to how the surgery goes tomorrow.

As always, Thank you SO much for your prayers and support! We really appreciate it!

Nathan, Kristina and Jaylie


Here are a couple of pics from this week:

Jaylie - Day 66 - week 37

Jaylie is doing better though still not completely well. The Dr's today explained they were not able to find anything negative in the tests, the tests completed are showing normal results. The upper and lower contrast GI tests confirmed the flow through Jaylie's bowel is unblocked with no perforations (both good things).

Jaylie's swelling has come down a bit but not completely. Jaylie's lower half is still swollen. The Dr's have advised they were going to do a colon biopsy by Monday to test for Hirschsprung's disease. Hirschsprung's disease is a disease that affects the bowels ability to pass substance due to the lack of nerve development. The Dr's don't believe Jaylie has Hirschsprung's disease but would like to rule it out.

The Dr's explained there may be a couple of things going on with Jaylie:

1) Premature displacement (aka, her colon is just premature)
2) Feeding sensitivity (problem with processing large amounts of breast milk or breast milk in general).
3) Some sort of sickness or disease like Hirschsprung's
4) Unknown

What the Dr's are doing is eliminating all the possibilities, one at a time, by starting with the conditions that are most life threatening to Jaylie. So far the Dr's have not been able to find any major conditions that would explain why Jaylie is having a tough time with feeds. If you recall, early on when we talked with the Dr's about Jaylie and what to expect, the Dr's advised due to the IUGR (growth restriction) there was a high possibility there would be problems with Jaylie gut due to the blood flow being restricted from the gut area most-likely affecting the gut development. The Dr's and nurses have told us, before we reached this point, a lot of premature babies have problems with feeds which can last for long periods of times, sometimes months. The Dr's reiterated today we may just be at a point with Jaylie where we have to work to get her fed. The Dr's assured us they are working non stop to identify what's going on with Jaylie, once they rule out all the major diseases or issues which may be causing Jaylie's swelling they will start focusing on a feeding strategy.

I know what I have explained sounds a bit nebulous (vague and inconclusive) but it all makes complete since to me and I feel completely confident in what the Dr's are doing, why they are doing it and how they are going about dealing with these issues - all-the-while keeping the main goal in mind, which is helping Jaylie to grow, develop and mature. I am very thankful for the set of Dr's God has put over Jayile! Though not perfect, they have been amazing and used to help Jaylie achieve amazing results :).

This week has been tough on everyone (the Dr's & nurses, friends & family, Kristina, myself & Jaylie). We were advised earlier on there would be lots of ups and downs, but most of our 2+month stay so far has been some what positive. This week is the first roller coaster week we've had since the first weeks Jaylie was born. This week has brought back old unpleasant memories. This week reminds us we are still in the Neonatal Intensive Care Unit for a reason, Jaylie is still very fragile and has a lot of growing and maturing to do.

As always, thank you SO much for all your prayer and support! We really appreciate it!

Nathan, Kristina & Jaylie

Here's a pic from today. Thanks to the Solamito's for the uber cute hat!

Jaylie - Day 64 - week 36 4/7

Jaylie didn't have a good day today :(. Jaylie started to swell back up again so the Dr's decided they needed to stop feeding her breast milk and schedule the contrast enema to watch the fluidity flow through Jaylie's lower bowel. After the Dr's do the lower bowel contrast testing they will mostlikely do an upper bowel contrast test where the Dr's watch the flow of fluid through the bowel looking for any blockage or slowing. These tests will be done first thing in the morning with the results being available within an hour or so after the completion of the tests.

Jaylie had a bunch of Destats and Bradies (where her heart rate and oxygen levels drop sharply then rise back up) today. These Destats and Bradies tell the Dr's and nurses Jaylie isn't doing well and is working hard just to keep herself oxygenated and her heart rate up. The Dr's and nurses are keeping a vigilant eye on Jaylie at the moment. If Jaylie continues to Destat and Brady the Dr's will mostlikey put Jaylie back on the ventilator.

We will keep you posted as to how Jaylie is doing and how the test go tomorrow.

As always, thank you SO much for your prayers and support!

Nathan, Kristina & Jaylie

Jaylie - Day 63 - week 36 3/7

Good news! On Monday, the Dr's decided the extra tests they talked about potentially doing were not necessary and that Jaylie could start being fed breast milk again, yay (in my previous post I talk about the tests the Dr's did and potential tests they were talking about doing)!

Jaylie is now back on a regular feeding schedule and is being monitored closely for excess swelling. If the excess swelling starts to pop back up again, the Dr's with adjust the method of feeding and reevaluate as to whether additional tests and/or procedures are needed. Right now the Dr's are delicately balancing Jaylie's feedings, lung development, and stomach distention (swelling) due to the air Jaylie is taking while on vapotherm (vapother is used to help with lung development). It takes true precision to be able to administer the correct levels of support to help Jaylie grow and develop naturally without interfering with development or cause harm. We are thankful and blessed Jaylie is at Swedish, one of the best Neonatal care facilities in our state.

Jaylie is now 1361 grams = 3lbs! We've hit the 3lb mark, yay!


As always, thank you SO much for your support!

Nathan, Kristina & Jaylie

Jaylie - Day 61 -- week 36 1/7

I apologize for the delay in updates. Things were going so well for so long there was nothing really new to post besides the fact that Jaylie is growing :). This week was a hard week. Jaylie's stomach has been distended for some period of time now, almost since birth. The problem with the stomach being distended (basically bloated) is if it becomes too distended, the Dr's worry about things breaking, like organs being stretched so far they actually start to tear and rupture. Jaylie is now where near the stage of things rupturing, but earlier this week reached a stage where the distention in her stomach started to effect other part of her body like her legs and chest. Earlier in the week, Kristina noticed Jaylie's right leg started to swell. The Dr's took a look at it and said the swelling may be due to prematurity. The Dr's continued to explain, in premature babies like Jaylie, the liver (which is responsible for processing and passing swelling the body produces) is premature and not able to keep up with the amount of swelling the body produces and therefore slight swelling may occur in the legs and such. The Dr continued to say they would only be concerned if the swelling started to effect Jaylie's breathing -- well, the swelling got worse and ultimately started to effect Jaylie's breathing. Jaylie got really swollen, so swollen she had a hard time breathing and was experiencing discomfort with anyone would touch her. The Dr's took immediate action as soon as they saw the progression in the swelling by taking Jaylie off of her feeding regimental and starting a myriad of tests to try and find the root cause of the swelling. Though the Dr's have yet to find the root cause of the problem, they have been able to successfully being the swelling under control while they continue to investigate the problem by performing xrays, ultrasounds, bloodwork and potentially exploratory testing of her upper and lower intestinal track.

While the investigation into why Jaylie is suffering form this swelling and distention is on going they have taken Jaylie off her normal feeding of breast milk and put back on a clear diet involving supplemented nutrients.

Jaylie is in good spirits, moving around good, has good energy levels and looks overall well with the exception of a swollen stomach.

Jaylie's stomach has come down considerably within the last couple of days which is a good thing.

Hopefully we will get a conclusive diagnosis of what the problem is (if there is a problem) here in the next day or so. In the mean time, please keep us in your prayers, praying for the healing, maturity and growth of Jaylie's intestinal track.

Jaylie is now 1345 grams = 2lbs 15.4 ozs (almost 3lbs!!!).

I will post more details as they become available.

As promised (like 10 days ago...) here are some more pictures from the last week:



I have posted a bunch more here Jaylie - Jan 2010

As always, thank you SO much for your pray and support!

Nathan, Kristina & Jaylie

Jaylie - Day 54 - week 35 1/7

I apologize I have not posted anything new within the last 10+days, but in this case no news is good news :). Jaylie is now 2lbs 12.5oz = 1261 grams and 13.5 inches long! She'll be hitting 3lbs here in no time! Jaylie has had some slight ups and down but overall it doing very well. They put her back on a low dose of vapotherm because her lungs were not opening up completely when she was breathing on her own showing Jaylie needs just a little bit more help with the lung development but over all is doing really well.

Jaylie is getting WAY bigger and cuter (not that she wasn't adorable already)! Jaylie starting to fill out more and plump up like little healthy babies do.

Jaylie is still on track to come home around the mid February time frame, maybe early March.

Kristina and I are preparing our lives and home for our new arrival, going out and buying baby furniture and setting up the house in anticipation for our little girl to come home.

I took a couple new pictures with my phone and posted them on facebook. Here is one of them:





I took some better pictures with my REAL camera I will post this week. She is growing SO fast now its AWESOME!

As ALWAYS, we really do appreciate all the prayer, love and support we have received from each and everyone of you. You all have been priceless gifts in our lives. Kristina, myself nor Jaylie would NOT be in the place we are now without you all! We love you all from the bottoms of our gracious hearts! THANK YOU THANK YOU THANK YOU!

Sincerely,

Nathan, Kristina and Jaylie

Jaylie - Day 45 - week 33 6/7

Jaylie is doing well. Jaylie is growing fast and developing nicely. Jaylie is over 2lbs now and continues to grow each day.

Kristina gave Jaylie her first bath this last Monday. Jaylie wasn't super thrilled about the even but endured it non the less.

Jaylie has had several ups and downs experiencing 'Bradys' and an extended stomach due to trapped air from the vapothrem therapy. The Dr's decided to take Jaylie off the vapotherm therapy and move her to just a nasal cannula treatment. The nasal cannula treatment is really similar to the vapotherm with the main difference being there is no pressure being supplied through the tubes -- Jaylie is now responsible for breathing on her own, whoa!

Jaylie will hit the 34 week gestational age mark tomorrow. This is a major mile stone. At 34 weeks the Dr's look to start bottle feeding as soon as Jaylie shows she is ready to start attempting feeding from a bottle -- this is something you can pray with us about -- Jaylie being able to bottle feed without any issues.

Here is a picture from this week.



I have posted a couple new pictures here: Jaylie's Album

As always, thank you SO much for your prayer and support! We really appreciate it!

Nathan, Kristina & Jaylie