Jaylie - Day 40 - week 33 2/7

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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

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

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

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:

1. 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.



2. 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

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

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

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

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:

1. Termination of the pregnancy

   
   

2. Intervention with a < 10% of survival

   
   

3. 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