Nathan Jeffrey's Blog

Jaylie - 2yrs old

2011-12-27T16:42:00.000-08:00

Happy holidays!

Jaylie is doing well. She is up and walking around now. No more crawling :).

Jaylie is continuing to grow and develop. We have made some progress with eating and drinking but not enough to where she is eating and drinking regularly. Jaylie still takes little sips of stuff and itty bitty tastes of stuff.

Jaylie LOVES to read books at the moment. She will pick a book up and come waddeling over to whomever will read it to her as fast as she can. As soon as you are done reading the book to her she waddels over to the books as fast as she can, gets another one and comes right back as fast as she can :). It's adorable watching her get so excited about reading books.

Christmas has come and gone. Jaylie was very blessed and received many gifts from friends and family -- thank you very much!

Jaylie has shown some interest in opening gifts but no major excitement. The gift she was most excited about this year was a soft fluffy butterfly pillow pet from her aunt Amy. Jaylie shook, screamed with excitement and then bit it's nose upon opening it and feeling it's soft fluffy cover. This was Jaylie's first healthy Christmas of which she thoroughly enjoyed -- thank you all for helping to make it so!

We are days away from the completion of 2011. 2011 has been a wonderful year for Jaylie. We hope pray and expect many more positive years and even better years to come (positive thinking really does work :) ).

Thank you all for your prayers and support! We could not have gotten to this point without them. We are eagerly looking forward to what the future has in store for us.

Happy New Year everybody!

Nathan, Kristina and Jaylie

Pictures of Jaylie's second birthday party: Jaylie's 2nd Bday Party

A couple of recent pictures:

Jaylie - 23 months

2011-11-01T15:14:00.000-07:00

Jaylie is doing really good. She is up and walking to the best of her abilities, very vocal and making audible sounds to communicate likes and dislikes.

Jaylie has made some slight progress with putting food in her mouth. She has tasted popcorn and gummy bears on her own but hasn't eaten anything yet. Jaylie has made some improvements in drinking some liquids as well.

We went to Children's hospital today to meet with the Neurologist and Nutritionist.

Both the Neurologist and Nutritionist were very pleased with Jaylie's growth and development since they saw her last (in April of this year) and encouraged us to continue to do whatever it is we are doing because it is working well -- thank you Jesus!

The Nutritionist mentioned we could start feeding Jaylie some blended foods and gave us some material on how to formulate and prepare blended foods properly. I am super stoked to try some blended food stuff! We have a super blender (not the official name) from blentec that will turn anything into liquid :). I am excited to get to use it to blend up foods for Jaylie :)

Jaylie growth and development is on the 'regular' 0-2 years old growth charts (woot woot!). She is in the 3 percentile for height and weight and the 40th percentile for length to weight proportion -- Jayile is growing well at a normal pace :)

Jaylie will be 2 years old here on the 18th! Wow, can you believe it's been 2 years already!?!

On Nov 19th Jaylie will have her very first 'healthy' birthday! We are super stoked to be able to have and host a birthday for Jaylie during which we don't have any major medical issues to be wary about!

Jaylie is infatuated with Elmo and Curious George right now so we are going to have an Elmo themed birthday party.

If you would like to attend Jayile's 2nd (but really her first health) birthday party please send Kristina and email so we can get you an invitation. Kristina can be reached at: kjeffre < at > gmail dot com

Thank you all for the prayer and support, it really has paid off!

We really appreciate your prayer and support!

Hopefully you can make it to Jayile's 2nd birthday party, if not, we wish you all the best and Happy Holidays!

Sincerely,

Nathan, Kristina and Jaylie

Here are a couple of recent pictures:

Above picture taken by our good friends Mike and Sara Kippen. If you need any photography or videography work done, Mike and Sara @ mkippen.com come HIGHLY recommened! Check out their site for more info: http://www.mkippen.com

The below are curtosy of the dearly beloved Steve Job's and his/my iPhone

Jaylie - 22 months

2011-09-27T18:22:00.000-07:00

Jaylie is doing well. The visit with the neurologist went very well. The neurologist was very pleased with Jaylie's overall development and growth -- in-fact, the neurologist was ecstatic with Jaylie's overall growth and development :) God is good!

Jaylie growth is starting to show up on the growth charts, yay!

Are part of Jaylie's physical therapy, the therapists decided Jaylie needed some orthotics for her shoes to help with stability in her ankles. Since Jaylie has been wearing her orthotics, her stability has improved greatly, she has even taken some steps on her own! It is only a matter of time before she is walking around, woot woot!

picture of the orthotics:

Jaylie is starting to make some word to object association. Jaylie really likes computers, iPads and iPhones. We have a bubble game on our iPads and iPhone. Jaylie loves the bubble game and says 'bubble' while playing it.

Jaylie playing on her keyboard:

Jaylie is taking baby steps towards eating. She puts some food objects in here mouth like chips and some other things but does not chew them nor swallow them. Jaylie will drink very very small drops of some liquids sometime, but drinks them non the less. The Dr's say it may take Jaylie several more years to start eating regularly (boo...).

On a not so fun note, Jaylie has decided she doesn't like to go to bed anymore. Every time we start to get her ready for bed she starts to cry and gets really upset -- no fun at all, but a good sign as she is expressing she self and her dislikes :D

Overall Jaylie is doing really well! Thank you Lord!

We are coming up on her 2 year birthday, can you believe it!

Our 1lb 3oz 11inch Jaylie is now 24lbs 31 inches!

Jaylie has been seizure free this year, thank you Jesus!

Please keep Jaylie's development and growth in your prayers, it's working!!! :D

Thank you so much for your prayer and support!

Nathan, Kristina and Jaylie

Jaylie - 21 months

2011-08-24T20:01:00.000-07:00

Jaylie is doing well. She is growing and learning.

Jaylie's oral feeding is still progressing, though we still have plenty of work to do.

We have another appointment with the Neurologist next month to discuss the MRI Jaylie had last month to look at her hippocampus growth and white matter effects from the vigabatrin use.

To-date, there has been no seizure activity which is absolutely amazing and a true answer to prayer!!! If you remember back several months ago, the Neurologist advised there was a 50/50 chance of seizures coming back. I know we are only a couple months out from completely coming off vigabatrin, but everyday that is seizure free is a blessing, thank you Jesus!

We've had a good summer thus far. We've done a couple of cool things with Jaylie including her first road trip and jetboat ride. Jaylie had a great time on the road trip, and half of a great time on the jetboat :)

Thank you for all your prayer and support! You are amazing!

Nathan, Kristina & Jaylie

Here are some new pictures of Jaylie. She is getting bigger, pretty amazing when you think about how far we have come eh :)

Jaylie - 19 months - Vigabatrin Month 6 (Last month)

2011-06-30T20:28:00.000-07:00

Jaylie is doing well, still growing and developing. We are still working with Jaylie on walking, talking and eating. Jaylie is not eating anything by mouth. We are hoping this will change when once we completely taper off the vigabatrin here in a couple of weeks. The plan is to continue on the zonisamide. The neurologist advised tapering off the vigabatrin has a 50/50 chance of seizures returning. A 50/50 percentage is not a good percentage when you are referring to seizure activity... Thus far we have not see any seizure activity pop up, praise God!

Jaylie is continuing her weekly occupational therapist and an oral therapist visits.

Jaylie is motoring around the house (crawling) and pulling her self up on everything we let her.

There is no real major news to report, which is actually a really good thing :). It is nice to have a somewhat 'normal' period of time without any major events happening, praise the Lord!

The eye Doctor wants Jaylie to wear some corrective eye glasses, if she will wear them, to address a slight issue with her right eye but said it would not be a major issue if Jaylie decides she does not want to wear them.

Please continue to keep Jaylie's development, growth and health in your prayers. We are praying God would complete heal Jaylie of all seizure activity.

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

Nathan, Kristina and Jaylie

Here's a new pic with Jaylie's new frames (the lens' are on order).

Jaylie - 18 months - Vigabatrin Month 5

2011-05-21T10:31:00.000-07:00

Jaylie is doing well. She is crawling around a lot, very talkative, making lots of different audible ah, ha, ma, na, da kind of sounds with an occasional dada, mama, nana but no real word association yet, that I have seen.

We went to Children's hospital at the end of April to switch over Jaylie's care to Children's. The visit went very well. The Dr's are great and very through. We are really pleased with Children's.

While we met with the neurological Dr at Children's, he gave us some very good advice and some encouraging reminders.

One of the key points I took from the neurologist at Children's was one of his comments on Jaylie's two week intensive therapy session and the results we saw during the session. The Dr advised not to take the two week intensive therapy sessions results as a sign advising we need to have Jaylie in therapy very day to see results. The Dr advised studies have shown what we are currently doing (Jaylie's twice weekly therapy sessions) were more then enough and exactly what we needed to be doing. What I found amazing about these recommendations and advise is it came unsolicited -- Kristina nor I had any discussion about Jaylie's intense therapy sessions nor discussion how we felt about them nor how these events made us feel post completion of the session. The Dr just knew what to say and what issues to address before we even knew they were there -- that is really cool to me and the sign of a someone whom is excellent at that they do.

The Dr advised not to compare Jaylie to other children of the same age. The Dr explained it this way, Jaylie is on her own track in this race. While racing, all the other kids are traveling 100 miles an hours, hitting growth and developmental milestones at certain intervals due to the speed being traveled. Jaylie is hitting those same developmental milestones but at her own space, say like traveling at 60 miles an hour instead of 100 miles an hours. The Dr went on to explain he is more concerned with children that completely stop developing, or start to go backwards. The Dr stated growth and development is a good thing no matter what the pace may be. This feedback from the Dr came not because we expressed any concern with Jaylie's development but came from the Dr's insight into these issues and experience. This information was another very valuable piece of information and very helpful perspective to adopt.

These two keys pieces of information (Jaylie's therapy scheduling and developmental path) were two major issues of which were not at the forefront of my conscientiousness. They were there amongst all the other day-to-day issues we face. The neurologist strategically chose these issues to address at the perfect timing before any negativity or wrong thinking sunk in and started to root. The meeting with the neurologist was very good and crushed some ill thinking before it even started, which I find very cool and awesomeness -- thank you Jesus!

At the end of April, the neurologist advised, from what he could see of Jaylie's development, overall she had matured into the 6-9 month range. He was pleased with her growth and development and encouraged us to continue to do exactly what we were doing with Jaylie.

Jaylie is crawling all around the house now. She is crawling up to things and pulling her self up to stand. She is still a really happy social baby. She's got ton's of teeth. Her attitude and personality is developing more and more each day. She gets frustrated with some not being able to move things or herself around into the positions she wants to at times but is a fighter and ultimately gets where she wants or moves on to something else.

Jaylie is scheduled to end the vigabatrin treatment in June. We meet with the neurologist at Swedish within the next couple of weeks to do another EEG and discuss or treatment plan for the infantile spasms. At this time Jaylie is doing great, growing and developing and seizure free, praise God!

Thank you so much for your prayer and support! It is priceless and most-of-all, effective! Thanks again!

Nathan, Kristina and Jaylie

Some recent pictures:

Jaylie 16 months - vigabatrin month 4

2011-04-12T19:15:00.000-07:00

Hello, it's been a while, my apologizes. I started this blog towards the end of March but as many of you know, life moves so fast - days, weeks and months flash by before you realize it...

Jaylie is doing awesome considering she was born @ 1lb 3 oz almost 17 months ago! As a reminder of how good God is and how amazing He is, He has helped us to battle extreme prematurity, Infantile Spasms (a catastrophic form of epilepsy) and cerebral palsy just to name a couple of major mountains we've face in the last 17 months - wow, yah!?!

What's happening now:

Things are well overall :). We are overjoyed to report Jaylie is now crawling, yay! Jaylie participates in physical therapy at home with a therapist twice a week to work on oral eating and mobility. Jaylie was recently selected as a candidate to participate in a two week long daily therapy training for therapists. This event happens once a or twice a year (I don't recall off the top of my head) during which top Dr's and therapists come in and train our local therapists on new training techniques. During this two week therapist training session Jaylie learned to crawl. We can't thank the therapists enough for all their hard work these last two weeks - most of all we can't thank grandma Debbey enough for taking Jaylie and working with Jaylie during therapy for the last two weeks. This last two weeks of training has been a priceless gift. Many many thanks to all that participated and most of all thank you Lord for giving us the opportunity and helping Jaylie grow and develop!

Jaylie's bubbly personality is starting to come out more. She laughs and gives out full faced smiles all the time. She was the life of the therapy sessions with her positive and infectious laughter and smiles.

Jaylie is not eating yet but is starting to play with solid foods biting and chewing on them - go Jaylie go!

We recently switched a majority of Jaylie's Dr's over to Children's in Seattle based on Dr's recommendations. Our first visit to the children's GI Dr was a huge relief. The GI Dr advised as to why Jaylie has been spitting up, explained all the current available surgeries and medications to address the problem and them explained why we did not need to do any of them. He explained the reason Jaylie has reflux the way she does is due to her stomach not being stretched out due to her not eating and the sphincter muscle at the top of her stomach not contracting to hold her food in. The Dr explained this is a common problem even adults face of which Jaylie should grow out of over the next couple of years, yes years. The Dr said it usually take 2-3 years to completely overcome this problem and that the reflux will start to get better after Jaylie starts to eat solid foods.

The GI Dr adjusted Jaylie's night intake through the feeding pump we have her on to give Jaylie more food at night and less volume during the day. This adjustment has helped quite a bit with Jaylie spitting up.

Medications:

Jaylie is on the vigabatrin, zonisamide and a couple anti acid medications. The vigabatrin has worked well to control the infantile spasms. We are slated to taper of the vigabatrin in May and June.

Conclusion:

Overall things are going well. We thank you for your continued prayer and support. We really value and appreciate your prayer and support! We could not do it without you!

Nathan, Kristina and Jaylie

PS: I mentioned in my last blog my dad was battling colon cancer. He went through surgery during which the Dr's were able to remove the cancer. He now is going through 6 months of chemotherapy. He is in good spirits and doing as well as one can. Thank you for your prayer and support!

Here are a couple of new pictures of Jaylie:

Jaylie - 15 months - Vigabatrin month 2

2011-02-28T08:22:00.000-08:00

Since our last blog Jaylie has been doing well. Jaylie is growing, maturing and has been seizure free (yay!)! To date the vigabatrin has done an excellent job of normalizing Jaylie’s EEG patterns. Jaylie's daily medication intake has been dropped to only two medications a day (not counting prescribed vitamins and such ), which is awesome seeing how in December we had 11 daily prescriptions to administer! The routine number of Dr’s visits we attend has been cut down from 3 times a week to monthly and even quarterly for several of the 8 + Doctors Jaylie is currently being seen by. Right now the plan is to continue the vigabatrin until June, slowly introduce zonisamide back into Jaylie’s system and then continue on the zonisamide after we stop the vigabatrin in June.

Jaylie is still not eating regularly orally, but is eating very tiny amounts of whatever we can get her to eat. We are making progress slowly.

Jaylie is starting to get up on her hands and knees and rock around, she has become a lot more vocal and likes to move around lot though she has not become mobile yet. Jaylie sees an occupational therapist twice weekly to help with movement, oral feeding and development.

Jaylie has lost a little bit of weight, which has caused per pediatrician to become concerned and so the pediatrician has bumped up Jaylie’s daily calorie intake. It is not a major weight loss, just something we are keeping our eye on at this point.

Jaylie has had to have a couple follow-up EEG’s and one MRI over the last couple of weeks to monitor her brain activity while on the vigabatrin. The EEG’s have improved and the MRI did not show any ill effects from the vigabatrin. While reviewing the MRI results, the neurologist noticed Jaylie’s hippocampus (part of the brain that controls short and long term memory) was not completely developed which is concerning and can cause developmental problems if the hippocampus does not develop completely. The neurologist is not overly concerned at this point but is concerned none-the-less. Part of the underdevelopment of Jaylie’s hippocampus has to do with her being extremely premature and so the neurologist is going to do another follow-up MRI in 6 months to check Jaylie’s brain development again.

Please keep Jaylie’s developmental progress in your prayers. We have a long way to go and many more years of work to ensure Jaylie has the best quality of life possible. Also, my father (Michael) was diagnosed with stage 3 colon cancer in Dec. He underwent surgery in Jan to has a cancerous mass removed. He is recovering well and will be staring chemotherapy in an effort to completely eliminate the cancer from his body. If you would include my dad (Michael) in your prayers as well we would appreciate it!

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

Nathan, Kristina and Jaylie

Jaylie - 14 months old - vigabatrin day 44

2011-01-15T12:46:00.001-08:00

Happy New Year!

Overall Jaylie is doing really well. The vigabatrin has really been affective. Jaylie's brain activity has almost completely normalized. Jaylie has continued to be seizure free while on the vigabatrin. We will continue to use the vigabatrin for the next 6 months or so.

Jaylie has lost all of the swelling that happened during the ACTH use, has leaned out a bit and gotten longer. Jaylie's appearance is changing rapidly every couple of days.

Jaylie is still not eating orally and still spitting up a bunch. We are working with Jaylie to get her to start eating orally again. Progress has been pretty slow with the oral eating stuff.

Jaylie, myself and Kristina have been off and on sick from around Christmas time until now but we are getting better.

The occupational therapist is working with us and Jaylie to help Jaylie with eating and movement. We are working with Jaylie on sitting, standing and crawling. Jaylie is able to sit and stand with support but is still not crawling or mobile yet.

Jaylie is laughing, moving around, playing and a lot more vocal making dada and other short syllable sounds.

The last couple of weeks has been pretty crazy and intense with the holidays and such. Though we thoroughly enjoy the holidays, I am glad to be in the new year and working on establishing a new 'normal'. If you recall, this crazy roller coaster of seizures and an Infantile Spasms diagnosis started at the beginning of October. We were not sure what the holidays were going to be like with Jaylie being sick and the medical treatments we had to go through... We are happy to be starting a new year healthier then we ended the previous year. It feels like we have turned a new chapter and are on working towards establishing a new day-to-day routine.

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

Nathan, Kristina and baby Jaylie

Jaylie – 1yr 2 weeks – Vigabatrin Day 3

2010-12-05T22:15:00.000-08:00

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

2010-11-14T18:42:00.000-08:00

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

2010-11-05T17:26:00.000-07:00

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

2010-10-30T21:08:00.000-07:00

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

2010-10-23T17:01:00.000-07:00

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

2010-10-18T19:14:00.000-07:00

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

2010-10-15T14:04:00.000-07:00

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:

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

2010-10-13T15:14:00.000-07:00

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) :

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

2010-10-11T13:21:00.000-07:00

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

2010-10-09T01:28:00.000-07:00

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

2010-10-06T14:50:00.000-07:00

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

2010-10-05T17:27:00.000-07:00

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

2010-10-04T21:10:00.000-07:00

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

2010-08-29T17:01:00.000-07:00

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

2010-07-28T21:04:00.000-07:00

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

2010-06-17T19:18:00.000-07:00

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

2010-06-03T22:26:00.000-07:00

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

2010-05-28T11:53:00.000-07:00

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

2010-05-19T21:02:00.000-07:00

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

2010-05-05T00:15:00.000-07:00

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

2010-04-18T21:12:00.000-07:00

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)

2010-03-30T07:14:00.000-07:00

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

2010-03-23T19:16:00.000-07:00

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

2010-03-15T01:24:00.000-07:00

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

2010-03-07T23:58:00.000-08:00

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

2010-02-26T18:51:00.000-08:00

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

2010-02-15T19:34:00.000-08:00

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

2010-02-07T11:52:00.000-08:00

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

2010-01-31T22:01:00.000-08:00

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

2010-01-30T16:47:00.000-08:00

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)

2010-01-26T17:16:00.000-08:00

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

2010-01-25T21:12:00.000-08:00

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

2010-01-22T23:03:00.000-08:00

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

2010-01-20T19:58:00.000-08:00

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

2010-01-19T20:43:00.000-08:00

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

2010-01-17T21:10:00.000-08:00

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

2010-01-11T08:48:00.000-08:00

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

2010-01-01T17:49:00.000-08:00

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

Jaylie - Day 40 - week 33 2/7

2009-12-27T18:47:00.000-08:00

Today Jaylie weighs 915 grams which is just over 2lbs, AWESOME!

This Christmas was a great Christmas for us. This week Jaylie has done really well despite a couple of up and downs. Swedish lifted the 'no visiters' restriction which allowed us to bring up friends and family to see Jaylie for the first time - a priceless gift! We have been given many precious gifts. We have received the priceless gift of Jaylie and the many miracles manifested in Jaylie growth, healing and development. And we received the priceless gift of your prayer and support!

We have MUCH to be thankful for and my heart is overjoyed with the experience of giving and receiving this year. We have given more than ever and receive more than ever before. Thank you Lord, and thank you all for the priceless gift of support you have given us!

As this year comes to a close this week, and Christmas has come and gone, I am reminded of all that has happened to Kristina, myself and Jaylie. I am over joyed with what the Lord has blessed us with. It has been said life is not about enjoying your arrival at your final destination but about enjoying the journey along the way to your final destination. Our journey this year has been rich with flavor both desirable and undesirable. This favor has brought about an awareness and realization our lives will never be the same. We have been put through situations which have caused us to reflect on what is most important in life and has caused us to grown in every fashion possible, including adding to our family.

Kristina and I am grateful beyond words for all the Lord has provided us, both pleasant and unpleasant.

Thank you SO much for being part of our lives and giving us a gift we can never repay, prayer and support through a challenging time. Your prayer and support has truly changed our lives and helped grown and nurture a new life, our wonderful daughter Jaylie!

Thank YOU!

Happy New Year!

Nathan, Kristina and Jaylie.

Jaylie - Day 35 - week 32 3/7

2009-12-23T10:46:00.000-08:00

Jaylie is still doing well. They have taken the thingy off her skin that monitors her body temperature. The Dr's have decided Jaylie has matured enough to be able to maintain her own body heat so constant body heat monitoring is not necessary. Jaylie's body temperature reads are still taken every 4hrs at her car times, but no longer require 24x7 monitoring, yay!

They have started dressing Jaylie in clothes everyday now which is awesome! Another step closer to full maturity and coming home!

Jaylie is 856 grams ( 30.5 oz = 1lb 14.5 oz -- almost 2 lbs!!!)!

Jaylie had several spells of desats, 'bradys', weight dips and a blood transfusion this week, reminding us Jaylie is still premature. But... Jaylie has overcome ALL those challenges and has spit in the eye of reason by gaining several more ounces in weight despite the challenges she faced this week! Go Jaylie!

Kristina has been able to hold Jaylie a lot more and for a lot longer (sometimes hours at a time) which is really good for Jaylie and Kristina -- good bonding and growing time for both.

Of course things could be 'better' and are not 'perfect' but from the perspective of having a baby at 27 weeks with a birth weight of 545 grams things are going AWESOME, like unbelievably awesome!

We'll take and post some new pics with her dressed and some more Christmas pictures of course.

Since we've been in the NICU, for over a month now, we've seen several of Jaylie's playmates come and go and come back then go again. All of them WAY bigger than Jaylie. There was a 32 weeker (the same age Jaylie is now) born a couple of days ago and brought into Jaylie's shared room and she weights 4lbs! Sort of put things into perspective with not even weight 2lbs yet... Even though Jaylie is doing awesome, she is uber tiny!

Thank you for taking the time to follow our story and follow us along this challenging journey! We really appreciate it!

As always, thank you SO much for your support and prayer! Your support and pray has been a life save and truly priceless - a debt will never be able to repay... THANK YOU THANK YOU THANK YOU!

Merry Christmas!

Nathan, Kristina & Jaylie

Jaylie first photoshoot w/Santa

2009-12-21T20:58:00.000-08:00

Swedish is an awesome hospital! So is the march of dimes organization! Combined they provide a visit with Santa bedside for Jaylie with a photographer to take pictures. I of course brought my camera to share in the moment. Below is a link to Jaylie's album where I've posted some pictures from today's event.

Thank you Swedish and march of dimes!

Truly priceless!

Jaylies album: HERE

Jaylie - Day 32 - week 32

2009-12-19T20:16:00.000-08:00

Jaylie is doing really well. She had a little bumpy road this week, but over all is doing well. The Dr's decided to give her a blood transfusion because she was looking a little pail and one of the tests they did showed some really low numbers (sorry for the vague description). The nurse said the low blood numbers requiring a blood transfusion are typical in premature babies because of the prematurity of the bone marrow development (your bone marrow is what creates blood cells Wiki Bone marrow).

Over all things are going very well!

Today Jaylie weighs 820 grams = 28.9 oz = 1lb 12.9oz

As promised, I've posted some new pictures in Jaylie's album HERE

Here's a new picture:

As always, thank you SO much for the pray and support!
We love you all!

Nathan, Kristina & Jaylie

Jaylie - Day 26 - Week 31 2/7

2009-12-14T19:26:00.000-08:00

Today's blog isn't a long blog but worth blogging about :).

Yesterday, the Dr's decided to take Jaylie off of cpap and put her back on vapotherm! If you remember, vapotherm is the first therapy the Dr's put Jaylie on the very first time they took her off the ventilator just days after she was born. When I first heard this news I was sort of thinking they probably took Jaylie off of cpap because they were having a problem with the cpap or something. I was shocked to find out the reason the Dr's chose to take Jaylie off of cpap was because she had improved so much they felt it was time to take her off cpap. I did a double take when the nurse first said the reason the Dr took Jaylie off cpap was due to Jaylie being ready to move to the next step. If you recall, the nurses advised us Jayie would most-likely be on cpap for several weeks and possibly +6 weeks. After 1 week they have taken Jaylie of cpap! That is amazing!

On top of the cpap being taken off, Jaylie was wide awake, very calm, eye's wide open and moving around when we went to visit with her yesterday. It was wonderful to see her peaceful, awake and happy with the breathing apparatuses off of her! Jaylie definitely likes being free of all the breathing stuff :)

Yesterday was a major milestone for Jayile. The nurses again are amazed with her progress -- like jaw dropping amazement...

Well, just wanted to let you all know your prayer and support is paying off and well appreciated!

Thank you SO much!

Nathan, Kristina and Jaylie

PS: I, of course, know you are wanting to see pictures. I will be sure to post some as soon as I take them this week :)

Jaylie - Day 25 - week 31 1/7

2009-12-13T00:53:00.000-08:00

Week 31! Yay!

This week was a really good week (thank you Jesus!)! Jaylie is doing really well. As of today (12/12/2009) Jaylie is 750 grams (1lb 10.5oz)! Very cool! Kristina and I have been able to participate more with Jaylie's care times doing things like diaper changes, taking her temperature, helping change her bedding/wraps and able to interact and touch her more. Kristina's mom got to hold Jaylie this week for quite a good while which was really cool. Being able to interact with Jaylie more is helping us as parents, and the family the hospital will allow in, to bond with Jaylie. It has been a really good week with Jaylie of with we are very appreciative of all whom have participated to help make it so -- most of all God for giving us the opportunity to share a healthy and happy week with our daughter.

This week the Dr's came back and said the head ultrasounds are no longer showing bleeding in the brain and the original diagnosis of breeding on the brain may not have been correct. The Dr's believe there was bleeding of the left ventricular (a major vein running through the brain) which has healed. What does this mean? To be honest, I'm not completely sure - all I know is what they originally thought 'could' have been a major problem is no longer considered a problem, things have improved, there is no need to do additional tests for this particular problem, yay!

Over the last two weeks we have been blessed with being able to share Jaylie's care times with my mom, Kristina' mom, my Dad, Angela (my step mom) and our pastor's. These are special times for us, the nurses and Jaylie. We are honored to be able to share these moments with some of the people we love and love Jaylie. Thank you all!

I can't express how wonderful it is to experience times of healing growth like we have this last week. Getting to this point has been a hard road, a taxing road, making enjoying the small quite bonding moments with Jaylie priceless. Kristina and I still have a long road ahead of us, full on uncertainty and trying challenges. Please continue to keep us in your thoughts and prayers. Your prayers and support have been a major factor in sustaining us to this point. Thank you SO much!

We wish you and your families the very best this holiday season!

Merry Christmas!

Nathan, Kristina and Jaylie

I've added a couple more pic's to Jaylie's album. You can view them HERE

Here's a new pic:

Jaylie - Day 21 - week 30 4/7

2009-12-09T23:21:00.000-08:00

Yesterday (day 21) we reached another mile stone! Kristina got to hold Jaylie for the first time! Pretty awesome huh! I'm sure it was awesome though Kristina hasn't said much about it. The nurse's said it was a really big deal of which I agree.

Jaylie is doing VERY well according to the nurse's and Dr's.

Jaylie is on cpap (here's some info on cpap HERE ) and still has a tube for feeding but is doing very well with her feedings and breathing.

Jaylie is now 705 grams (1lb 9oz) and 31.5cm (12.4 inches).

I've posted new pictures and video to Jaylie's album. You can view here album HERE

Here's a new pic:

And the video from tonight's care time:

As always, thank you SO much for your pray and support! It means a lot to us!

Merry Christmas!

Nathan, Kristina & Jaylie

Jaylie - Day 19 - week 30 2/7

2009-12-06T18:02:00.000-08:00

Jaylie is doing well today. They have set her up on a regular feeding schedule based upon her gestational age and current weight.

As I write this update from my cell phone (go droid!) the Dr's have decided to put her on auto ventilation in preperation for removing her from the ventilator completely.

Hopefully she will be breathing off the ventilator here in a couple of hours.

Pastor Peter and Gaby came up today to visit and pray with us which we really appreciate! Thank you!

We'll keep you posted on tlhow things play out!

Update - Jaylie is Off the ventilator and on cpap, yay!

As always, thank you SO much!

Nathan, Kristina and Jaylie

Jaylie - Day 18 - week 30

2009-12-05T12:31:00.000-08:00

Jaylie is still doing well. They haven't taken her off the ventilator yet but I'm sure that step will be taken in the right timing.

Jaylie is now 690 grams (1lb 8.3 oz)! Good job to Kristina for making some good stuff :)

I've added a couple more calculators here: http://jeffreystop.com/jaylie/#age

I've added a Gestational age and Dr's day age to the 'How old is Jaylie' age counter.

Thank you SO much for your prayer and support!

Nathan, Kristina and Jaylie

Jaylie - Day 17

2009-12-04T20:09:00.000-08:00

Jaylie is still doing really well. Still feeding well, progressing and growing nicely. The Dr's are looking to take her off the ventilator and put her on vapotherm, a form of nasal administered medication to help with breathing and lung development hopefully here in the next day or so - which would be totally awesome!

All is going well.

As promised, I've take and posted some new pictures to Jaylie facebook album. You can view those pictures here HERE

Here's one from today:

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

Nathan, Kristina and Jaylie

Jaylie - Day 15

2009-12-03T14:15:00.000-08:00

More good news! Jaylie is being fed breast milk now in really really small quantities - but is processing it. She's been on small quantities of breast milk for about 48 hours now and doing very well!

The Dr's have taken Jaylie off all the meds for the pulmonary hypertension and have given the ok on the heart, lung and cranial scans YAY YAY!

Jaylie has gained some weight (finally!) and now weights 650 grams ( 22.9 oz = 1lb 6.9 oz )! Woot woot!

They made me change Jaylie's diaper last night, yes made me, and I was surprised to experience she feels like a normal baby, just a bit smaller and a bit more fragile.

The Dr said Jaylie is doing really well, and that they are probably going to try and take her off the ventelator here in the next day or so! Can I get another Woot woot!

Jaylie has grown. I will get some more good pictures of her this week.

The Dr's have advised Jaylie is doing good, but we are not our of the woods by far yet. We still have a ways to go. The Dr's have said, the next set of challenages is going to be with feeding. The Dr's have said there will be ups and down's with feeding just due to being premature. Preemies like Jaylie with IUGR (Intrauterine Growth Restriction) tendency to have gut problems and digestive problems which makes feedings a challenge.

With Jaylie growing and Kristina and I being able to interact with her more it makes it harder to leave her at the hospital each day. Please pray for Kristina and I that God would help us with managing of our daily life's and our relationship with our baby girl Jaylie.

As always, thank you SO much for the pray and support, it works!

Nathan, Kristina and Jaylie

Jaylie - Day 11

2009-11-30T17:32:00.001-08:00

Things are coming along well. The Dr's have taken Jaylie off the oscillator and have put her on a regular ventilator. They have taken the tube that was inserted in through her belly button out as well. Jaylie is currently being fed through a feeding tube. The Dr's hope to start introducing breast milk into her system hopefully within the next couple of days.

The sooner Jaylie can start digesting breast milk the better. The breast milk contains 'stuff' that can't really be supplemented. The next major mile stone will be Jaylie being able to digest Kristina's milk.

We'll keep you posted!

Happy holidays!

Nathan, Kristina and Jaylie!

Jaylie - Day 8

2009-11-26T11:26:00.000-08:00

Day 8 is a good day :). Jaylie is doing well! They have taken her out from under the lights for jaundice and taken a couple IV line’s out of her so her leg and arm are free again :). They have turned down the oscillator a bit more and have a blanket over her incubator which blocks our light and sound. The nurses have advised Jaylie is liking her new setup a lot. Recovery is coming along well – yet another thing to be thankful for!

Jaylie - Day 6

2009-11-25T10:43:00.000-08:00

Sorry for the delay in posting, as you can understand our lives are quite busy, and with the holidays the draws for our attention have increased. With that said, Jaylie is doing well. Jaylie is still hooked up to lots of IV's, tubes and the oscillating ventilator but the Dr's are slowly moving the level of support the oscillating ventilator provides down. The way the Dr's decide as to how much support to provide Jaylie is based upon tests performed every couple of hours. They test her oxygenation levels, gases and lots of other 'stuff'. Based upon the test results, the levels of support, nutrition, medication, ect are adjusted. They run reevaluation tests every 4-8hrs depending on the condition they are monitoring and the severity of the condition. With that said, the Dr's are shooting for being able to take Jaylie off the oscillator hopefully within the next couple of days, yay!.

One new development is that of a diagnosis of pulmonary hypertension (high blood pressure in the heart and lungs) for Jaylie. What pulmonary hypertension is is the restriction of blood vessels in Jaylie’s lungs which affects oxygenation of Jaylie’s body and the amount of effort Jaylie’s heart has to put out to circulate blood. With pulmonary hypertension Jaylie’s little heart has to push really hard to get blood through the blood vessels in her lungs and with the restriction of the vessels, the lungs are not able to oxygenate the blood very well which means the heart has to work even harder to cycle through all the blood in the body more often to get oxygen to everything – as you can see, these events can cause some serious strain on the heart which can lead to cardiac arrest. The good thing is, we are at the best hospital in the state to deal with these types of conditions and because of the Dr’s and nurses religious dedication to monitoring and providing excellent care, they found this condition early and have started to treat it. The Dr’s have started treatment with a two pronged approach 1) being pumping Nitric Oxide gas directly into Jaylie’s lungs to loosen up the blood vessels 2) giving Jaylie some medication to reduce the high blood pressure in Jaylie’s heart. Jaylie is taking well to the treatment so hopefully we will be through this bump (bump being pulmonary hypertension) soon.

If you recall, I mentioned there was some concern around bleeding in Jaylie's brain on the left side and a swollen left ventricle - well, the Dr's and nurses have performed several more cranial ultrasounds, the results showing no change at all - which means, the concerns the Dr's had (notice I said had) are slowly dissipating (regarding the bleeding in the brain). The Dr's have said the bleeding is draining and there is a possibility the measurements and bleeding they saw was not due to the trauma Jaylie suffered last Friday (the set back that has put Jaylie in her current position) but that the bleeding and swelling of the left ventricle could have been there from birth being that the first cranial ultrasound they took was the Jaylie's first cranial ultrasound period. This is very good news! A level 4 cranial hemorrhage is very bad uber scary stuff!

Overall Jaylie is doing well. Thank you SO much for your prayer and support!

On a side note, I have to say, the level of support you all have provide Kristina and I is absolutely amazing! Honestly, I'm sure we would not be in the place we are now without you all – we could not and cannot do this without your prayer and support. You all are AMAZING! Thank you SO much!

Nathan, Kristina & Jaylie

PS: If you are interested in knowing how old Jaylie is exactly (it updates every second – yes I am a nerd…), I’ve added an age counter to http://www.jeffreystop.com/jaylie

Here are a couple of pictures to put Jaylie’s size into perspective (the bluish tint is due to the lights they have her under to treat jaundice):

Jaylie - Q & A

2009-11-23T23:39:00.000-08:00

Kristina's sister Amy sent me a couple of questions several people asked her. They are good questions so I am posting the questions and answers in this post:

How does Jaylie stay nourished?

There is a tube the Dr's inserted in through the nub ("nub" is a nate term for the little piece of umbilical cord left after they cut the cord which then shrivels up and becomes your belly button) of the umbilical cord into Jaylie's stomach a couple of minutes after she was born. They send her nourishment through this tube inserted. All the vitamin's, protein and fat's she needs is sent through the tube inserted.

Why can't you hold her?

There are a couple of reasons as to why physical touch is limited for babies this small. One is to try and regulate Jaylie's stress level's.The way I understand it is this, Jaylie only has so much energy to expend. What the Dr's are trying to do is focus that energy on growth and healing. The care and environment constructed is focused on putting Jaylie in the best position to promote growth and recovery. One of the the elements that detract from growth and recovery is stress. If Jaylie is stressed out, she then is expending her energy managing stress opposed to being relaxed and growing/healing. The Dr's have advised physical touch, loud noises and light, among other things, cause babies in Jaylie's condition high levels of stress which is not good. They limit the amount of light, noise, touch, ect Jaylie is subjected to to manage the amount of stress she is put under. With that said, there are certain periods of time we are able to come in and touch/interact with Jaylie. These times are called 'care times'. Right now they last about 1hr every 8hrs. During these 'care times' we can gently interact and touch Jaylie. We cannot physically hold Jaylie yet due to they way touch affects her and due to the fact that she is hooked up to several IV's and ventilation tubes which makes taking her out of her incubator impossible. The question was asked again today when we would be able to hold Jaylie and Jaylie's primary nurse advised she would do her best to try to make that happen within the next couple of weeks.

How long will Jaylie be in the hospital?

They have advised Jaylie will most-likely be hospitalized until her full term due date of Feb 12th. This date is a good rule of thumb -- Jaylie could be there a bit longer or a bit shorter all depending on how she progresses from day to day.

Jaylie – Day 5

2009-11-22T14:47:00.000-08:00

Today's update is brief which is good. At this point, no news is good news :).

Jaylie is still on the HFOV (High Frequency Oscillating Ventilator) but is slowly being weened off the HFOV. The Dr's have been able to slowly turn down the level of support the HFOV system is providing. The Dr's have advised Jaylie is stable and recovering. The plan is still to slowly remove all the tubes, IV's and ventilator asap but not so fast as to cause Jaylie more harm but not so long as to affect Jaylie's growth, it is a delicate balance. Overall, Jaylie is doing well.

The Dr's have followed up with several chest x-rays without incident. They have also done blood work with the results showing the over all levels of all the stuff they are measuring are trending the right directions (some up and some down).

Now we wait and allow God to do His work in Jaylie and in us.

Each day we travel up to Seattle to be with Jaylie and stay informed with how Jaylie is doing, what the doctor's plan is, what the current goals are and what the long term milestones are. As the plans change, status changes, short term goals and long term goals are achieved we will share them with you.

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

Nathan, Kristina and Jaylie

Jaylie - Day 4

2009-11-21T14:04:00.000-08:00

Jaylie had a setback yesterday (11-20-2009) which gave us all a scare and has reminded us our journey to healthy stability is still far from complete. Yesterday Kristina was getting ready to leave the hospital and had spent a majority of the day with Jaylie and the nurses – everything was going well, and the nurses expressed they were really surprised to see how well Jaylie was doing. There was one thing they noticed, Jaylie was having to exert a slight amount of energy to breath, not enough to be concerning, but enough to take away from her energy supply. The Dr’s and nurses want all of Jaylie’s energy to be spend growing and maturing so they decided to help Jaylie with the slight labored breathing. This decision was made shortly after Kristina and I left to go and get some food. As the Dr’s started the procedure to assist with Jaylie’s breathing, they put a tube down Jaylie’s throat, at that moment a large amount of blood came back up – this is really not good. The Dr’s found there was a hemorrhage of Jaylie’s trachea which caused a large amount of bleeding.

When Jaylie started to bleed from the tube insertion, this sent her vital signs plummeting, caused problems with oxygenation and other issues. The Dr’s and nurses had to work feverishly to order to stabilize Jaylie and keep her stable. After the Dr’s stabilized Jaylie, they ordered a complete set of tests including blood work, head ultrasound, chest x-ray and heart echo.

Though all the test results have not come back yet, there were a couple test results that did. Based upon the test results the Dr’s saw, they were able to make a couple of conclusions:

1) Jaylie is experiencing a condition all babies experience called “Patent ductus arteriosus” which typically dissipates with full term maturity (you can read about patent ductus arteriosus HERE). Because Jaylie was born so prematurely, this condition would be expected because she has not had time to develop completely. Patent ductus arteriosus has cause Jaylie to bleed a lot in her lung cavity. To address this problem, the Dr’s have put her on an oscillator which fills her lungs with air and provides internal pressure on the dustus arteriosus to help stop the bleeding. The Dr’s have also put Jaylie on a medication to help stop the bleeding.

2) The Dr’s saw a little bit of bleeding on the left side of Jaylie’s brain, and a oh so light inflammation of the left ventricle vain. These two conditions combined are not good, but the Dr’s is confident Jaylie will most-likely resolve this bleeding on her own. Bleeding on the brain is typical and is only problematic if the bleeding pools up and does not drain or if there is wide spread bleeding (across both sides and throughout the different regions).

Because of the amount of blood loss Jaylie suffered, they had to give her a blood transfusion.

So what does this all mean? Dr Hinson (he’s the best Dr! He is the Dr we first saw when Kristina and I did our consultation at Swedish) advised he was concerned not overly concerned with all these events – yes they are critical events that require 24/7 monitoring , skilled attention and care but he is hopefully and confident Jaylie should be able to pull through these bumps and setbacks.

What can we do? We can pray for Jaylie. The Dr’s have advised this is the road ahead of us, two steps forward one step back, good days and bad days. We can accept the good and the bad, be thankful for was we have been given and not focus on what has been lost but on what is yet to come. Jaylie needs our prayer and support to pull through all this. We can pray for Jaylie growth and development. We can pray for peace, courage, strength and good health to be granted to Jaylie. We can pray Jaylie continues to be granted the small daily miracles God has granter her and us thus far. We can also thank and praise God for all He has done up to this point. Our God is a good and faithful God!

As always, Kristina, Jaylie and I thank you SO much from the bottom of our hearts for all the prayer, support, encouragement and love you all have shown us! We couldn’t do it without you!

Nathan, Kristina & Jaylie

Jaylie's picture album

Jaylie – Day 2

2009-11-19T12:16:00.000-08:00

Today is Jaylie's second day in the hospital. She is doing amazingly well! All the Dr's and nurses are amazed at how well Jaylie is doing being born at 27 weeks 4 days. The Dr's have take Jaylie off the ventilator machine and have put her on oxygen – Jaylie is now breathing on her own!

Kristina is doing very well. She is already up (abiding by the Dr's recommendations of course) and about and headed towards a smooth recovery.

Jaylie is looking, growing and doing even better today than yesterday! The Dr's are going to put Jaylie under some lights possibly today or tomorrow to help with her skin development and to treat jaundice but over all are amazed at how well she is doing!

The Dr's say it is typical for preemies to do really well for a couple of days and then take a step backwards or have bad days. They have advised to step our expectations for having good days and bad days – so far the first two days have been AWESOME days thanks to all of your prayers and support!

Pray works! Jaylie is living proof of this!

Thank you all SO much! Your prayers and support is and has been a life saver, is truly priceless and appreciated beyond what words can express.

Nathan, Kristina and Jaylie

New pictures:

Facebook picture album (i've added 5 new pictures since the last post): Pictures HERE

Jaylie's Born!

2009-11-18T19:58:00.000-08:00

Jaylie is here!

Today, November 18th, 2009 at 1:48PM PST, Jaylie was born 545 grams (1.3lbs) 11.5 inches at 27 weeks and 4 days. Both Kristina and Jaylie are doing very well. Jaylie is in the NICU. I talked to the Dr's and nurses have advised Jaylie will be in the NICU most-likey until February 12th (the original due date) give or take.

Kristina will be here in Swedish for the next couple of days recovering from the c-section today.

Jaylie is very active, moving around, has good color, lots of hair, everything looks good, in correct proportion and healthy (even though she is VERY premature).

While delivering Jaylie, the Dr's found the umbilical rapped around her neck twice which was causing Jaylie serious problems! The Dr's suspect the umbilical cord issue most-likely was causing some of the heart rate issues we were seeing over the last couple of days.

Kristina and I are over joyed Jaylie has been born and is in good heath (besides the extreme immaturity).

I'll post pictures soon (my phone is charging). I am really amazed at how well she looks under the current circumstances.

Thank you for all the prayers and support! We really appreciate it! The support and prayers and really made a difference!

Nathan, Kristina and Jaylie

Here are a couple more pictures: HERE

Jaylie Week 27 4/7 - Update

2009-11-18T11:53:00.000-08:00

So the ultra sound came back ok but they have decided to do an c-section today at 12pm.

UPDATE: The Dr came in an said they pushed our c-section to 1pm PST due to another emergency (which mean we are not an emergency which is good).

Keep us in your prayers!

BTW: Kristina and Jaylie are doing well. Kristina is in good spirits at the moment. We have family up here with us. The plan at the moment is for Kristina's mom to accompany her through the c-section and I then go with Jaylie into the NICU.

I will post additional info as it becomes available/as soon as I have a free moment to update this blog.

Nathan Kristina & Jayline

Jaylie - Week 27 4/7

2009-11-18T07:30:00.000-08:00

Well, we made it past Friday the 13th woot woot! After that Fridays scare, on Saturday and Sunday Jaylie’s heart rate numbers went back to normal without any abnormalities with the reversal in flow decreasing (which are both good pieces of news!). So Saturday and Sunday were pretty uneventful days which we appreciate .

On Monday, Jaylie’s heart rate started to dip down and fluctuate. All the nurses and Dr’s have openly stated they are quite shocked to still see Kristina and Jaylie still there hanging in there. We have far exceeded all the Dr’s best case scenario forecasts. If you recall from my first blog, the neonatologist we stop too thought Jaylie’s placenta would last anywhere from 3days to 3 weeks – here we are 27 days later with the placenta still functioning. The Dr’s/Nurses also mentioned, each day Jaylie stays in the whom that knocks 3 days of off the NICU (Newborn, or Neonatal, Intensive Care Unit) stay, so we are happy for every day we can get! I’m sure we would not be this far without all of your prayers and support! To have been able to stay this long has been the first of small of many miracle’s we continue to seek God for and are being granted!

With that said, it looks like we are drawing neared to the conclusion of this first step. As I write this, Jaylie’s heart rate numbers are dropping again and this time staying low, which is a sign the placenta is giving out. The Dr’s have Kristina on a 6hr heart rate monitor rotation (for Jaylie) – the started this rotation yesterday when Jaylie’s heart rate started to drop again. The Dr’s have scheduled another ultra sound this morning at 8am PST (which is in a couple of minutes). Based upon the results of today’s ultra sound, they will decide as to whether they schedule a c-section later on this morning or not.

Baring another miracle, the report is concluding Jaylie’s deliver will be most-likely within the next couple of days.

Aside for all of that, we are drawing nearer towards the 28 week mark which is another premature gestational mile stone. If all goes well then next couple of days Kristina is schedule for a growth and measurement ultra sound this Friday. Remember how I mentioned they will only do growth measurements every 10-14 days?, well Friday will be another 10-14 days from the last growth ultra sound, that is another major mile stone!

So despite what happens over the next couple of days, this week is a good week! I’m confident Jaylie is growing and doing well, which is a miracle, God’s answer to all our prayers…

I will blog again as soon as I can. Sitting down and writing this all out takes times energy both of which I am running low on.

Thank you ALL so very much for your prayers and support!

WE could not do it without you all!

Sincerely,

Nathan, Kristina & Jaylie

Jaylie – Week 26 6/7

2009-11-13T22:00:00.000-08:00

After a week in the hospital, Jaylie's blood flow through her umbilical cord has started to show slight sign's of reversal (which is not good). The Dr's are monitoring Kristina and Jaylie intensively now. There has been chatter from the nurses that Jaylie may be delivered vi c-section this weekend.

This week has been a trying week. There were a couple scares due to Jaylie's heart rate dropping suddenly (down to the 80 range) and then jumping back up again (155 range) and then running high (+160 range). On Tuesday, the nursers ran in, stuck an IV in Kristina's arm and put her on oxygen all the while talking about getting an OR room ready for an emergency c-section. As you can imagine, this was a very scary moment. From that point until now, the excitement has died down one notch from "c-section in 10 minutes" to "prepare yourself for a c-section at any moment".

Kristina is in good spirits though stressed and tired.

As I write this, it looks as though we will NOT have a Friday the 13th baby, which I am thankful for :). Only 1hr and 40mins to go before we are officially 27 weeks and out of Friday the 13th :).

That's all for now.

Nathan, Kristina & Jaylie

LINK: What happens when babies are born at less than 28 weeks?

Jaylie – Week 26 1/7

2009-11-08T20:07:00.000-08:00

Kristina and Jaylie have been here in Swedish for a couple of days now. They are stable and doing well. The Dr's performed another ultra sound, did measurements for size, weight and blood flow. The blood flow to Jaylie is still restricted, but has not gotten any worse (which is good). Jaylie has grown another 3oz's and is now up to 1lb 4oz ( 567 grams – they measure preemies in grams ).

Kristina's blood pressure is high and has gone up and down quite a bit, so the Dr's have decided to put her on blood pressure medication and heparin to thin her blood.

Kristina and Jaylie are being checked on a regular schedule (typically at least 3 times a day), heart-rate for Jaylie and blood pressure for Kristina.

It's challenging for Kristina to get rest with all the testing that is done every couple hours or so 24/7, but she and Jaylie are doing well.

The Dr said they are monitoring for the following conditions primarily:

Kristina's blood pressure to reach life threatening level's (Sustained +160 systolic or Sustained +110 diastolic). Here's a link explaining blood pressure issues: High blood pressure

The are also looking for signs of the development of preeclampsia which is the development of high blood pressure and protein in the urine due to the kiddies starting to lose their ability to function.

Right now Kristina's blood pressure is high and a warning sign but the protein urine level is well below warning stages which is good.

The blood flow to Jaylie to move from “absent” (aka restricted) to reversal. What reversal means is the blood flow stops and reverses for a period of time – this is a very bad situation. Reversal of flow is life threatening to Jaylie and/or can cause serious health problems like brain damage.

If the Dr's see either of the two scenario's above (preeclampsia (Kristina) or reversal of blood flow (Jaylie)), they will rush Kristina into surgery for an immediate c-section to delivery Jaylie.

Realistically, the Dr's suspect either scenario 1 or 2 to happen sometime before Jaylie's due date of February 13th. What we are hoping and praying for is for both Kristina and Jaylie to remain stable for as long as possible. Each two+ week period both Kristina and Jaylie continue to be is stable health is a major mile stone! Here are some details regarding the different gestational age births:
Less than 28 weeks: CLICK HERE
28 – 31 weeks: CLICK HERE
32 – 33 weeks: CLICK HERE
34 – 36 weeks: CLICK HERE
The longer both Kristina and Jaylie remain in this 'holding pattern' the more Jaylie matures and grows -- this naturally maturity and growth is what we all are praying for.

So what does this all mean – well, the way I understand it all is this, we have made it past the “the only way Jaylie will live and have a heathly life is via a miracle” stage into the “You've made it past the REALLY unsurvivable stage, now you're in the 'not good' stage”.

With that said, all the prayer, support and encouragement has and is working! The main Dr we saw on Friday said she calls these babies amoebas because the live and thrive in an environment the medical community statistical says they can't survive in – they are fighters and survivors! Jaylie is officially one of those fighters!

We appreciate all of you prayers and support! They are not going unheard nor unappreciated!

Thank you all SO very much!

Nathan, Kristina & Jaylie

UPDATE - Week 26 - Part 3

2009-11-06T22:20:00.000-08:00

So we've been here at the hospital for a couple of hours now. Kristina's been seen by several nurses and several Dr's. The main Dr over seeing Kristina and Jaylie's care just stopped by and gave us a run down on what to expect. The Dr has advised, as of now, she is taking Kristina off of the lovenox and changing up her supplement regiment. The Dr has advised Kristina and Jaylie will be here until Jaylie is born whether that be a couple of days or hopefully several weeks from now. The Dr is enthusiastic that Jaylie has come this far and grown from the last time we were here (several weeks ago for a consultation), that Jaylie seems to be stable and that the tests completed so far have come back stating Kristina is still at high risk for “stuff” and Jaylie is still really small but both are stable. The Dr is hopeful all that will be needed over the next couple of days and/or weeks will be monitoring, basically, waiting for Kristina's body or Jaylie to show signs requiring medical intervention (delivery). So, what I understood the Dr to say is, we are here until it is time to deliver Jaylie whether that may be tomorrow or 15 weeks from now (Jaylie's due date).

At the moment, the room we are staying in is really nice. We are up on the 5th floor and have an awesome view of the Seattle area.

My sister and her mother in-law (our good friend Noreen) stopped by and brought us some dinner (thank you very much!). We all sat around and chatted all-the-while Kristina is hooked up to machines to monitor her heart rate and blood pressure. Her blood pressure machine was beeping at us every time a measurement was taken that exceeded xxx / +90 mark. Kristina was measuring around 150/90 ish while we chatted and ate, which was higher than we would like. After my sister and Noreen left, Kristina stopped talking and actually started to rest a bit, and amazingly her blood pressure dropped to 136/84... As you can see, Kristina needs to stop talking and just rest :)

Well, I think that's all for now. We will make sure to keep you posted on the up coming experiences as they come along.

As always, we appreciate all your support and prayers! Thank you so very much!

Nathan, Kristina & Jaylie

UPDATE - Week 26 - Part 2

2009-11-06T20:04:00.000-08:00

Well, not so good news this week. I am currently writing this blog from the Swedish medical center as a result of today's doctor's visit...

Events leading up to today:

On Thursday Kristina went in for another Dr's apt at the maternal fetal medicine center -- during which she was assigned to see another Dr (this would be 7th Dr thus far) to complete another dopper and receive part one of a two part steroid shot. The Dr gave her the steroid shot to stimulate Jaylie's growth and development. They have also put Kristina on lovenox to thin the blood to the blood pass through into the placenta – a daily shot she has to self administer.

Today we went back to the Dr to receive part two of the steroid shot and talk to the Dr about what to expect going forward. During our +2hr apt today, the Dr was highly concerned with Kristina's blood pressure, so concerned she recommended immediate hospitalization. We were shocked to hear this news, but have taken it in stride.

Now we sit here admitted to Swedish for an unknown amount of time. The Dr's have advised they are highly concerned with Kristina's blood pressure and will at minimum have her admitted be here 24-48 hours. They are concerned Kristina may be in the early stages of preeclampsia, so they will be extensively monitoring Kristina and Jaylie over the next 24hrs...

Today sucked to say the least...

Keep us in your prayers! We will keep you posted!

Nathan, Kristina and Jaylie

Jaylie - week 26

2009-11-02T21:43:00.000-08:00

We went to the Dr today for growth measurements and doppler blood flows. The news was positive. The blood flow has remained the same and Jaylie has grown from 13oz's to right around 17 oz's (right around a 4oz gain). Jaylie has seen positive growth all around -- though she is still measuring about 3 weeks behind. The Dr's are still on edge suspecting things could turn for the worst at anytime, advising an early birth and hospitalization is likely for Kristina and Jaylie...

Our spirits are still high and optimistic. Each day completed without incident is one step closer to a full term birth!

Keep us in your prayers! They are being heard and working :)

We appreciate your prayers and support! Thank you SO very much!

Nathan, Kristina & Jaylie

Jaylie

2009-10-25T14:17:00.000-07:00

Jaylie's Story

Well we start off in November of 2008. Kristina and I went to meet with Dr Kustin in Seattle. Dr Kustin is one of the most successfully In Vitro Fertilization specialist in Washington state. After a meeting with Dr Kustin he advised us, despite the many complications we faced, he was sure he would be able to help us conceive a child. So after much prayer and deliberation (mostly around how to come up with the estimated $15,000 is was going to cost us out of pocket because our insurance does not cover IVF), we decided to give it a shot. In February 2009 we started our first IVF cycle. It was full of wonderful events like driving to Oregon last minute to buy IVF drugs second hand from a wonderful couple to save several thousand dollar's in drug costs – and lots of needles, shots, daily Doctor appointments and blood draws.

In May 2009 the first stage of the IVF cycle completed resulting in 19 wonderfully strong healthy fertilized embryos. At this point in time we had gone through rigorous physical, mental, spiritual and financial strains, but we were not done yet. The next step was implantation. The recommendation was we implant fresh embryo's right away to take advantage of their full potency. So we did, and on May 23^rd 2009, Jaylie's life began.

Over the next several months, we did everything any new expecting parents would do. We held off on telling friends and family we were pregnant until we were successfully past the first trimester. Then as things progressed, the Dr's assured us based upon the tests and measurements we had a healthy baby on our hands and offered their congratulations. We continued forward like any newly pregnant couple, sharing the joys with friends and family.
Kristina's appointments went off without a hitch, all the tests came back as they should, and the measurements as expected until we hit the 20 week mark.

At 20 weeks, the ultrasound came back smaller than expected, they were able to identify Jaylie was a girl, but were starting to become concerned with her size. We initially thought the tech whom did the measurements may have been mistaken because it was her first day on the job and she clearly was having problems and challenges with the machine, at one point she had to
leave the office to retrieve the manual for the ultrasound machine. We were sure things were fine, and that it must have just been user error or something along those lines. So we happily moved forward without a care in the world. Picking out baby clothes, baby this and that, registering for a baby shower and going over baby names, concluding with the name of Jaylie.

Then 22 weeks comes along and the Dr's confirm the original ultrasound measurements were indeed correct and that Jaylie's growth was falling behind schedule – this is very alarming and concerning news. Kristina's Dr's was quite concerned with the results and so she recommended we see a fetal specialist. So in week 23 we meet a wonderful set of fetal specialist's in Bellevue.
They are the top in their field utilizing the latest tools and technology to assist in diagnosis and treatment. We were quite impressed with their thoroughness, professionalism and precise conclusions – though we were not encouraged with their conclusion. The first fetal Dr we saw did an awesome job with the ultrasound in addition to performing doppler blood flow tests at various points in and around the placenta and little Jaylie. He was happy to see Jaylie moving around healthy, and having a good steady heart rate and proper sized and complete anatomy, with the exception of a smaller abdomen and overall smaller in size. As he continued to examine the placenta and blood flow he found some concerning irregularities with the major arterial arteries connecting to the placenta, umbilical cord and Jaylie's internal blood flow. He assured us we would be taken care of but said we needed to speak to another Dr's because this condition was outside of his realm. He said he would call Kristina's Dr and then get back to us, so we left.

We went home some what concerned after the appointment with the fetal specialist. Kristina called her Dr right way to let her know what the fetal specialist advised. Kristina's Dr was extremely upset and advised she expected the fetal specialist to give us move information and was going to call them straight away to setup another appointment right away – of which she did, which let us back into the fetal specialist Dr's office again just hours later to meet with a second fetal specialist that deals with babies in our circumstances. This second Dr sat us down and asked if we understood what all the measurements and blood flow irregularities meant. We advised we did not. The Dr started to explain what they believe was happening was the placenta was not functioning the way we would expect, not supplying Jaylie with the blood flow she needed to develop. Because Jaylie was not getting the blood flow expected her growth has been drastically affected – Jaylie was in blood starvation mode resulting in Jaylie sending all the blood she was receiving to the brain, heart and lungs thus explaining the small abdomen. The Dr continued on to explain they have seen these type of condition many times before typically resulting in a continued degradation of the placenta's ability to function resulting in the Jaylie suffering brain damage and/or death. The Dr continued on to advise there maybe other causes of Jaylie's current dire condition all of which can be tested for but there is not a cure for any of them. As you can understand, this news was devastating news, just weeks ago everything was perfect and moving along as expected – now Jaylie is not growing, being starved of blood flow and given a very small chance of survival let alone being born without any major disability...

Skipping past a bunch of emotional turmoil distress and pain, we decided to undergo tests needed to rule out any major medical issues causing Jaylie the problems she is experiencing. We then go home and wait for the results of the tests and then come back in 3 days to check the blood flow again to see if things are improving or not. Well, the latter occurred. When we came
back to discuss the test results and take additional measurements of blood flow the results were grim. The tests came back negative for any other medical condition causing Jaylie's grow issues. The doppler measurements concluded the blood flow had decreased a step further. The Dr advised we decide what we want to do sighting 3 options:

Termination of the pregnancy
Intervention with a < 10% of survival
Go home and let nature take it's course most likely resulting in Jaylie passing way

As I'm sure you can understand, at that moment in time, we were not willing to accept any of those options. We knew we have one of the best neonatal care facilities in the state in Seattle, so we asked if we could meet with one of the top neonatal Dr's at Swedish in Seattle ( if you are counting, this is Dr number 5 ), she was more than happy to immediately setup an appointment for us to meet with the neonatologist . Two hours later we were in Seattle meeting with one of the top neonatologists in Seattle.

Dr Mac, neonatologist with Swedish medical center in Seattle, sat down with us and clearly outlined our circumstances, gave us statistics on our situation, shared personal stories both with positive and not so positive outcomes ( all the while being paged no less than 10 times requesting his professional opinion on an urgent matter and/or birth ) explained that if we were to 'intervene' today and have Jayie via c-section because of Jayie's Intrauterine growth restriction (IUGR) he was not certain he could keep her live. He continues to say, even if he could keep her alive, she would suffer sever life long medical challenges. Dr Mac said, the reason why Jayie is in bad shape right now is because without the blood flow she is not able to develop and mature things like a completely mature abdomen structure (thus the smaller than expected abdomen measurement). Dr Mac explained what he typically has seen in these types of situations, where intervention is exercised, is the baby is delivered via c-section, hooked up to all kinds of medical equipment just keep the baby alive, and that usually about 2-3 days after the delivery the baby will start to have major abdominal issues which can cause death or life long medical issues among the other life long medical issues the baby and parents would be tasked to live and deal with.

Though my explanation of Dr Mac's chat with us may sound bleak and depressing, both I, Kristina and Kristina's Dad ( who came with us to meet with Dr Mac ) felt incredibly relieved and equipped with the right information and answers we needed to have the peace needed to take the next steps forward. Kristina's dad said and I quote “He was phenomenal.” of which I agree 100%.

So where does that leave us, well, we've sort of come to our conclusion by process of elimination ( at least from my perception ), the option of termination is definitely ruled out, intervention has been ruled out as well, so that leaves us with putting Jaylie in God's has and allowing His perfect will to be exercised in Jaylie's and our lives.

No one but God alone knows what the hours, days and months ahead of us behold.

We are prayerfully living out each day thankfully for each heart beat and moment Jaylie is still with us.

Kristina and I don't have the word's to describe the love and appreciation we have for all the prayer and support we have received from you our friends and family.

Please continue to keep us in our thoughts and prayers, we need them an appreciate them all.

Thank you So very much!

Love,

Nathan, Kristina & Jaylie