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

Jaylie is home!


Is that amazing to say or what!?!

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

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

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

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

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

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

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

He is risen!

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

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

We love you all!

Sincerely,

Nathan, Kristina and Jaylie





Here are a couple of video's:

Jaylie - Day 126 - 4months 5days old

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

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

Jaylie is right around 5lbs 14oz now.

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

Nathan, Kristina & Jaylie

Here is a picture from about 5 days ago:

Jaylie - Day 118

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

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

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

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

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

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

Jaylie is right around 5lbs 6ozs now.

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

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

We could not do it without you!

Nathan, Kristina and Jayile

Here is a picture from Friday's surgery:

Jaylie - Day 110 - week 43 2/7

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

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

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

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

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

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

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

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

We Love you all!

Nathan, Kristina & Jaylie

Jaylie - Day 101 - week 41 6/7

Over the last 10 days Jaylie has been doing well.

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

The lower bowel refeedings have being going well.

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

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

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

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

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

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

I will post some new pictures asap.

Nathan, Kristina & Jaylie

Jaylie - Day 90 - week 40 2/7

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

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

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

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

Nathan, Kristina and Jaylie

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

Here is a picture from this week:

Jaylie - Day 82 week 39 1/7

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

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

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

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

Jaylie's prayer requests:

Intestinal development
Overall development and grow

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

Nathan, Kristina and Jaylie

Here is a video and picture from this week:





Jaylie's Feb pictures: HERE