The Day we have been praying for...

The day we have long awaited for came yesterday, Monday, December 29. It has been close to four months since JW made his way into this world with such a dramatic entrance and he finally made it home (Grammy and Poppy's house temporarily). We had tried to 'room in' with him a couple of weeks ago and he told us it just wasn't time for him to come home. 

We went to stay with him on Saturday in hopes of leaving the hospital with him. Everything went smoothly, we learned about everything he would need and how to care for him. We made it through the night and then Sunday and then boom, came Monday. We were finally discharged, with my Aunt Becky, Uncle David and Cousin Kim there to see us off. It was a beautiful day, one of the best in my life. Thank you to all of you that kept our family in your thoughts and prayers. I am amazed at the progress JW had made in the last few months. Please continue to pray for us and JW as we still have a lot of work ahead of us. Thanks to God who has watched over our family and touched our lives with beautiful blessings, especially now, having JW at home. 

Lots of love and great thanks,

Allie

P.S. As excited as I was to be bringing JW home and trying to make sure I had everything... I forgot the camera! I know I should remember a camera especially having worked at the newspaper. So anyway, we had to buy a disposable camera and I have yet to be able to develop them, but.... when I do, I will definitely put the pics up on the blog.

New Pics From Aunt Lindy's Camera!

Finally, some long awaited, recent photos of our little guy.  He looks VERY different from those first-time photos!  He is growing and looking more like a little boy every day!  The next couple of weeks will be very critical for JW, Allie, and all of our family as we prepare for him to come home from the hospital and tend to all our holiday plans.  Please be praying specifically for JW's continued healing, our family's strength and perseverance, and wisdom and discernment for JW's doctors.  Your prayers have made such a huge impact thus far, but JW still has a long road ahead.  Also, be praying for Wacy as he is currently at the Border Patrol Academy.  Enjoy the pics and stay tuned for more updates!

~JW's Aunt Lindy

It's getting closer....

Our precious little boy is getting closer everyday to coming home to his family.
Today, he weighs 6lbs, 4oz. He is doing well on his new g-tube. He is also off all oxygen and air through a nasal cannula.
Also, today he was moved back into the special care nursery in preparation for myself and Grammy to stay over night with him on Sunday.
We will be taking care of him, with nurse guidance, for a full 24 hours. We have to learn how to do everything the nurses do for him. I am not sure yet exactly when he will be able to come home, but we are definately getting closer. I believe it will be sometime this week. I just don't know what day.
Thanks to everyone for your thoughts and prayers for James Wilson. We still have a long road ahead of us, but it will be better for him once he gets home.
Please continue to pray for God to heal our precious little one so he may have a full recovery.
P.S. I didn't get any pics of him when I was there last, my camera would not work. So.... new pictures soon, I promise.

What a sweet angel...

I finally got to go see the growing boy on Tuesday, after not seeing him for 2 weeks! The poor little guy must have thought he had been abandoned. I had gone one weekend to see Wacy, started working again, to which now I am not. With the news of him coming home soon I said bon voyage to the paper. I also had come down with a cold, so I didn't want to expose him until I was completely over it. 

Anyway, JW is again in a crib, yeah! He weighe

d 6 pounds, 2 ounces yesterday. He has stayed over 6 pounds but does go up and down still. 

We were introduced to a milk pumping machine that will

 feed him when he gets home. That was interesting. We have so much to learn in a few weeks. 

He is doing well otherwise. They did a test on his liver

 because he is still a little jaundice. The are going to do a few more tests to find out exactly what is going on to cause that. 

We are looking at a couple more weeks and hopefull

y everything will go well, we won't have any more set backs and he will finally get to come home. 

Thank you for the prayers, thoughts and please keep th

em coming. We are getting closer and closer everyday to him coming home to his siblings. 

Here are some pics of him taken on Tuesday, the first one was taken by one of the nurses at Santa Rosa. 

A Whopping 6lbs, 4oz.!!

JW's doctor called me yesterday with an update. This week hopefully the orthopedist will look at his hips and decide what to do, whether it be a cast, brace, etc. He is also looking at him coming home in the next couple of weeks. Everything else is pretty much the same, he still has the nasal cannula with just an airflow. He is gaining weight very well, actual weight not water weight. Yesterday he weighed as mentioned in the title, 6lbs, 4oz. More to come as he grows and God blesses him. 

Thankful for good news...

I am so very thankful this day before Thanksgiving. I talked to a doctor today, he gave me an update on JW's progress and a timeline for coming home.
He said the earliest he would come home was late next week! Awesome news. We are getting closer.
A Happy Thanksgiving to everyone!
Allie

A small set back

Sunday, JW had an episode of apnea possibly caused by so many secretions not being swallowed. He had to be put back into the NICU, where he is today. He went back on oxygen for a little while and is now just on a small air flow through the nose canula. He is reported to weigh 5 lbs, 13 oz. I am not sure if that is correct, he would have had to gain a lot in one day for that to be correct. 

He also had an ultrasound done on his hips today, no results yet. 

Besides a small set back, he is doing good and continues to improve getting closer to coming home.

JW's Tummy Tube

Well, the last few days have been interesting and exciting.
Sometime last week JW graduated to a big boy bed as seen below.



Monday, JW had a feeding tube placed surgically into his tiny tummy due to his swallowing and sucking reflex being very weak. He was placed on a ventilator as more of a cautionary measure. He came off of the ventilator on Tuesday morning and was doing very well with the oxygen through the nose canula. The following are pics of him shortly after surgery.

This is his feeding tube or G-tube. Good news today also!! He is off of the oxygen and nose canula. Hurray! AND... he weighs... 5lbs...........7 oz. Yeah!! What a growing boy he is. I also got a voicemail in regards to beginning plans for discharge. Exactly what is going to happen, I have no idea because I returned the phone call too late but it was very encouraging.

I am very thankful for the Lord and what He has done to my family, to heal and hold JW in His arms. God has blessed our lives in many ways over the last 10 weeks and I pray He will continue to bless our precious little baby as well as our family. I also thank everyone else for all of the thoughts, prayers and support you have given to our family and JW.

I will update you on the whole discharge info as soon as I hear something. Please continue to keep JW in your prayers.

Allie

New pics...finally!

Sorry about the delay in getting pics up, our life has been some sort of hectic! Wacy just left yesterday for the Border Patrol Academy for a looonngg five months. So, we have been dealing with getting him ready and the normal day to day life with two busy kids, four if you count Duece and Lizzy.
Anyway, JW is getting better, slowly but surely, God is definitely taking care of our family. Now being 8 weeks old, they moved JW into an open crib a couple of days ago, he was getting too hot in the incubator. A big step for the little guy. They have also decided to put the g-tube or feeding tube in on Friday. This will be good so he can get the little tube out of his nose that feeds him. He is being fed 15 ml of milk per hour continuously or rather slow but constant, not all at once. He has worked his way back up after his infection. He lost some weight with being sick and coming off of the IVs again. But he is back up to 5lbs, 2oz. A few more ounces and he will be 2lbs bigger than when he was born.
Enough of the talk, here are some more pics..

Here is a video of the little cutie..

I will try to post something again after Friday, so check back.

Allie

Prayer Request

So, I know I have promised new photos and they ARE coming...I just don't have them yet.  Bear with us and we will get them posted ASAP.

On another note, please be praying for JW as we have learned he will be having a feeding tube put in sometime this week or next week.  Not sure on the date, but I will update again after I know more.  The doctors have elected to put the tube in so that JW can more easily be fed and have the tube removed from his nose.  Also, this will probably allow him to come home sooner than if the tube was not put in.  JW still cannot be fed by mouth as his swallowing and sucking reflexes are still weak.  Please be praying that these reflexes will become stronger every day.  Also pray that everything will go smoothly during the procedure and that God will guide and direct the nurses and doctors caring for JW.  Pray that the Lord will surround JW with His angels and empower them to protect and comfort JW during this time.

Allie also mentioned today that there were attempts being made to move JW to an actual crib!  This is great news and means that he is improving.  I know there are many of you who have been devoted prayer warriors for our little guy and we thank you and pray that God blesses you in return.  Thank you for your faithfulness...you have given us much hope!

I will update again soon with more info. on the procedure date and how everything goes.  Oh, and I will try to get ahold of those pictures...you aren't going to believe how different JW looks!

~JW's Aunt Lindy

Update (with new pics coming soon)

Allie, mom and Wacy went to visit JW yesterday and here is the latest.  He is back on milk (yay!) but has lost a little weight due to being off the IV (to be expected).  So, he is currently at 5 lbs.  He is still getting the milk through a nasal tube, but at least they removed his IV...which is great news!  Allie said he was pretty alert yesterday and it seemed like his eyes were beginning to focus a little more than in the past.  They had increased his oxygen a little, and this is something that will just vary by day almost, as he continues to develop physically.  No word on his hips or when they plan to take action on that issue.  Overall, JW is doing very well.  The intestinal issues seem to have just healed up and gone away...PRAISE GOD!  Allie has quite a few new pictures she will either upload or send to me for upload.  Thank you to all, again, for your prayers.  They are what is keeping us all afloat and heading JW in the right direction!  Pictures coming soon...you won't believe what a little chunk he is becoming!:)

~JW's Aunt Lindy

Hooray!

I just got off the phone with Allie and we have some really great news!  JW has been moved out of the NICU into the Special Care Nursery!!  This means he is doing very well!!  Also, he is up to 5 lbs. 2 oz.!  We are not sure if he is still on antibiotics for the intestinal infection/inflammation, but last we knew, the x-rays were looking good.  Once again, thank you for those prayers.  Even though JW has hit a few bumps in the road, he is doing exceptionally well for all he has been through...and it is definitely in part to the faithfulness of people like yourselves.  May God bless each and every one of you as He has JW and our family.

Oh, and one more thing...the doctors are fairly certain JW's hips are dislocated, but no word on what action they are planning on taking or when.  

~JW's Aunt Lindy

Tristin's first time holding JW

Sunday, October 26, 2008
Today was Tristin's first time to see and hold her new little brother. She waited very paitiently over almost six weeks to even see him for the first time.
We arrived at the hospital, washed our hands and put on our gorgeous outfits they provide for you to wear, you know those ugly hospital gowns you put over your clothes.
Then we went to JW's bedside where Tristin finally saw him face to face.

JW was doing good today, he was up to 4 lbs, 15 oz. He looks like a little chubbo compared to six weeks ago.

He was getting x-rayed only every 8 hours instead of 6. They were x-raying his intestines to check for purforation. Everything is looking good as far as the infection and colitis goes. He will still be on antibiotics for a while longer and he will still be off of milk for a while also.
He continues physical therapy and I work with him as often as I can.
Hopefully soon he will be at the 5 lb mark. He continues to improve and grow with the grace of God's hands.

A Busy Day for the Little Guy

Allie and I just returned from San Antonio and another visit with JW.  Monday was pretty uneventful, which is great!  The nurses did inform us that they found a little blood in his stool and sent a culture off for testing.  He was at 4lbs. 9 oz and on full feeds up to this point (all breastmilk, no IV fluids).  Although, not yet knowing what was causing the bloody stool, they took him off all milk and put him back on fluids.  They also drained his stomach contents and started him on antibiotics to get a jump on whatever was causing the issue.  Poor little fella now has two IV's in his head...one of each side so his hands and feet can have a rest.  Allie and I spent about an hour with him and then I headed to the waiting room so David could go in and see him.  Of course, JW was sleeping the whole time I was in with him...refused to open his eyes and would make the funniest, grouchy faces when Allie would touch him and try to wake him up a little.  However, as soon as David went in the little toot opened his eyes!  Below are pics from Monday.

Making funny faces...couldn't tell if he was smiling or mad but it was too cute!

Sleeping so peacefully.

On Tuesday morning Allie received a call from the doctor with the results of the culture from Monday.  It turns out JW has two different issues going on.  The first, is a bacterial infection which they believe resulted from his being on antibiotics (all the good bacteria was killed off and the bad, resistant bacteria was left behind).  This infection then caused another issue, necrotising enterocolitis, which is inflammation of the intestines and can lead to part of the intestine dying or rupturing and in those cases requires surgery.  Here is a link to more info. if you are interested:  http://www.ich.ucl.ac.uk/gosh_families/information_sheets/necrotising_enterocolitis/necrotising_enterocolitis_families.html

He is on multiple types of antibiotics and IV fluids.  We should know more once the antibiotics rounds are complete in 7-14 days.  When we arrived at the NICU there was a bright pink sign on JW's crib informing us if we were to handle him in any way we had to wear gloves and an additional gown.  So basically, he is sort of quarantined.  The infection he has is very contagious and it was important to protect ourselves and the other infants from contracting it.  

Tuesday, was all around, an exciting and busy day for JW.  I was blessed to have a front row seat in one of his physical therapy sessions and when Allie got to change a diaper.  Right now, the doctors, therapist, and radiologist are concerned about the possibility that JW's hips are dislocated.  We won't know for sure for at least a few more days as they are more concerned with treating his infections.  He does have trouble moving his legs and they think this may be why.  If you are up close to him, you will notice that his little feet and legs are slightly cock-eyed and tight.  The therapist told us that if his hips are dislocated, it was probably caused because of his muscle tightness...in essence his tight muscles could have pulled his hips out of joint.  So, when Allie changed the diaper they had to lift his whole body, not his legs, like you would normally do when changing an infant, just as a precaution.  Also, during therapy they had to move his knee and foot/ankle while being careful not to move his hip too much.  Right now Allie and the therapist are working on helping JW to relax his muscles.  He really likes to clench his fists.  Also, he is tighter on his right side than his left.  He was just moving his left arm up and down, no problem, but it was a little more difficult on the right.  Same thing with his legs and feet.  Below are some pictures I snapped during therapy.  Allie got to hold him to work with his hands and arms and then he was placed back in his crib for leg work.  One other thing we noticed, was how much more JW's mouth is moving...hopefully that is a good sign that he will soon begin sucking.  It sure looked like a mini sucking reflex to me!

It was so amazing to be present for so many little, but unbelievably special moments.  How grateful and blessed am I?!?  To see how big JW is, how far he has come, and how precious he is...words cannot express.  By the way, as of Tuesday he was up to 4 lbs. 11 oz.!!!  And he is officially a month old now.  He truly is a miracle.  I thank the Lord for him every day.  Keep those prayers coming.  I hope you can see how they have been at work in this little boy's life!  

~JW's Aunt Lindy

Monitoring JW's vitals after taking him out of his crib to do therapy.

I just love that the mommies get to assist with therapy...what better therapy than being in mom's arms!

Working with his tiny hands...relaxation is the key!

Allie is doing therapy with his arms...moving them up, down, out to the side...too precious.

Back in the crib to warm back up and do leg therapy.

Finally!  Awake....maybe?  See that left arm moving!

Changing his tiny diaper.

Now its time for leg therapy.

A little more awake now.  What a sweet little miracle lying in front of me!

Another meeting with the doctor...

I received a call from Allie earlier today with some more recent news.  She met with one of JW's doctors today and got the latest information on his progress.

After spiking a fever last week, being on antibiotics, and trying to do without IV fluids for nutrition, JW lost a little bit of weight going from 4lbs. 4oz. down to 3lbs. 15 oz.  However, they really aren't too concerned with this and feel he will quickly gain back what he lost.  He will need to gain about another 2 lbs. and they will begin trying to bottle feed him.  When he has gained enough weight, is sustaining it, and is drinking from a bottle then they will consider letting him come home.  Right now it is looking like it will be at least another 1-2 months, so somewhere around the end of this year he should make it home from the hospital.  Also, he has been moved to a different crib which is actually a good sign...they only move babies who are doing well.

I will be going with Allie to San Antonio next week, so more news and photos when we get back!

September 16, 2008 to present

After many phone calls and emails requesting updates on little JW, we thought a blog might better serve the purpose of keeping all of our family and friends in the loop on his progress since his arrival.  It is possible that several of us (me, Allie, mom, and who knows who else) will be taking turns updating with news and photos about once a week or more often if we have urgent or super exciting news, so check back often!  Let's start from the beginning...

James Wilson Taylor (JW) made the executive decision to enter this world on September 16, 2008 in Uvalde, Texas.  He weighed 3.6 lbs at birth in spite of being only 4 weeks premature.  Allie underwent an emergency c-section when the baby monitor showed JW to be in distress.  He had to be resuscitated upon delivery and was soon after air lifted to Christus Santa Rosa Children's Hospital in San Antonio.  His complications began as a result of Allie's near miscarriage early in her pregnancy.  Even though things looked to be in the clear after a couple of weeks of bed rest, she continued to have internal bleeding, unbeknownst to anyone.  The bleeding caused clotting which took up a good deal of the baby's room for growing as well as much needed oxygen and nutrition.  Allie was also very anemic as a result.  JW's umbilical cord was said to be the size of a drinking straw so you can imagine the results of something like that.

Since then, JW has been in the NICU in San Antonio.  He was breathing on his own after only a couple of days.  The bruising and swelling from being in distress and having to be resuscitated lasted for about 2 weeks.  He quickly gained weight from being nourished via IV.  Within the first couple of weeks he would open his eyes and just look at us in wonder with those big blue eyes (he has his big sister's and big brother's gorgeous baby blues!).  

I was so blessed and overjoyed to be at the hospital when Allie was able to hold JW for the very first time.  It was one of the most amazing moments of my life and I'm sure hers as well.  To be there to watch as my baby sister held her baby for the first time after not even being able to see him right away after birth, was indescribable.  It was as if you could actually see her heart leap out of her chest.  If you know my sister she has a huge heart, made of gold...she LOVES her babies more than life itself and it has broken my heart to watch her go through all of this with JW.  But on the other hand, she has been such an inspiration as well, because she has handled everything with more grace, love, and hope than I could ever dream of.  She is 100% positive that God is working a miracle in JW's life...in all of our lives through JW...and I believe it too!  I will never forget that day at the hospital, seeing the incomparable love and joy she felt as she held JW...words simply cannot describe it.  I am so proud to have been a part of that special day and I tear up at the mere thought of it.  The photos below are from that day.  What an angel he is.

Allie holding JW for the first time!  He was so tiny!

Still very bruised and swollen, poor baby.

 

As of now JW is at a little over 4 lbs. and last week he was taken off IV fluids and is strictly on milk.  He does still have a nasal tube as he has just recently begun to show interest in sucking and swallowing, which is great news!  He is still sporting an IV just in case the nurses/doctors need to access it quickly should he spike a fever or need medication of any kind, which he did sometime last week.  We are still waiting to see what the long-term results and implications will be as far as his neurological capabilites, but only time will tell.  So, keep those prayers coming and know that they are working!!  Just the fact that JW is here today is a miracle in itself, but with God ANYTHING is possible and we are hoping to be graciously blessed with a full-fledged, total healing of little JW, every square inch of his mental, emotional, and physical beings will be perfect!  Things are sure looking up!  All praise be to God for our little angel!

JW on the second day of my visit to the NICU with Allie.  He was still very bruised and swollen (as you can see around his eyes, especially).

I think he looked like Tristin to start with...Allie said he definitely has her chin!

My best to everyone and thank you for your prayers, gifts, and loving emails/calls/etc!  May each of you be blessed beyond your worth, as our family has.

~JW's Aunt Lindy