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!
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:
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...
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!
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.
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!
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!
