Jaylie - Day 75 - week 38 1/7

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

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

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

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

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



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

Moving on to the immediate and mid-term goals.

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

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

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

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

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

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

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

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

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

Nathan, Kristina & Jaylie

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

Jaylie - Day 74 - week 38

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

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

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

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

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

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

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

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

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

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

Nathan, Kristina & Jaylie

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

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

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

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

Jaylie is resting now and doing well.

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

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

Nathan, Kristina & Jaylie

A picture from before the surgery:

Jaylie - Day 69 - week 37 2/7

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

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

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

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

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

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

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

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

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

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

Nathan, Kristina and Jaylie


Here are a couple of pics from this week:

Jaylie - Day 66 - week 37

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

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

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

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

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

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

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

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

Nathan, Kristina & Jaylie

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

Jaylie - Day 64 - week 36 4/7

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

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

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

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

Nathan, Kristina & Jaylie

Jaylie - Day 63 - week 36 3/7

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

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

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


As always, thank you SO much for your support!

Nathan, Kristina & Jaylie

Jaylie - Day 61 -- week 36 1/7

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

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

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

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

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

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

I will post more details as they become available.

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



I have posted a bunch more here Jaylie - Jan 2010

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

Nathan, Kristina & Jaylie

Jaylie - Day 54 - week 35 1/7

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

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

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

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

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





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

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

Sincerely,

Nathan, Kristina and Jaylie

Jaylie - Day 45 - week 33 6/7

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

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

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

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

Here is a picture from this week.



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

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

Nathan, Kristina & Jaylie