"Before I formed you in the womb I knew you, before you were born I set you apart..." Jeremiah 1:5
On September 16, 2008, our lives were forever changed when James Wilson (J.W.) entered the world. He is a living miracle who has touched our hearts and revealed to us the greatness of God. This is his amazing story.
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.
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.
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!
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!
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.