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ALEXANDER’S JOURNEY

On September 30, 2015 Alexander decided he could not wait to come into this world and join his 3 older brothers. He wasn’t due til January 16, 2016. He Weighed in at only 1 lb. 10oz, classifying him as a “Micro Preemie”. After 5 days Alex was transfered to Levine’s Childrens hospital which is over an hour away from our home. Alex has had some issues with his heart and lungs, but is doing better so far. He also had some bleeding on the brain but his last scan showed that he was recovering very well from that also. The doctors say that babies typically stay at the hospital until their original due date.
Sept. 28, 2015 at 10:32am
Hey just letting everyone know Dixie has been admitted to the hospital. We came for a regular visit and they noticed that her cervix looked like it was dilating from the inside out. And sure enough my little hulk is trying to kick his way out! She is also 1 cm dilated from the outside so the risk of him kicking through and breaking her water is very high. Right now we are at NorthEast in the high risk area room 1119. Please just pray for us as we try to keep Dixie Harrison Jones pregnant ‍‌‌‌‌‌‌‌‍‍

Sept. 29, 2015 at 9:17am
Update on Dixie Harrison Jones: She is still hooked up to some meds to try and stop her contractions. The meds have started to take a toll on her. She’s still doing good and staying strong. Little Alex is still doing well and continuing to stay active. Just continue to keep them in your prayers please. The longer he stays in the better but he needs to stay in at least until Saturday. If he is born before Saturday he’s going to be sent to the hospital in Charlotte. If it’s after Saturday he can at least stay a little closer to home. But he needs to calm down and just relax until January lol. Thank you to my family and our loving Church family for all your help, we’d be lost without all of you!

Sept. 30, 2015 at 9:46am
Update on Dixie Harrison Jones: So we are still in the hospital and still in the high risk area. The magnesium that she is taking to stop her contractions but is making her feel horrible is suppose to be done today. They haven’t checked her cervix again yet and we don’t know when they will. They don’t want to aggravate it. One of the doctors said they’ll probably wait 2 days after the magnesium is done. So if she is still having contractions from now through Friday they’ll probably check her then. Little Alex is doing great. His heartbeat is great and strong. He just needs to stop kicking so hard and so low. Thank you to everyone that has prayed and for everyone’s support. Also as a side note because of the current events our son Bradley’s birthday party is no longer scheduled for this coming Saturday. If you were planning on coming we apologize but if you have already gotten him a gift you are welcome to still drop it off for him. He’s a little disappointed but he understands and he just wants his Mom and little brother to be ok.
So please continue to pray because we are not in the clear yet. If it’s God’s will that Alexander comes early just help us pray that he’s strong and that Dixie is taken care of also.

Sept. 30, 2015 at 4:52pm
IT’S TIME! PREPARING Dixie Harrison Jones FOR C-SECTION NOW. ALEX IS ON THE WAY

September 30, 2015 at 5:19pm
Alexander Cooper Jones Born
weight 1lb. 10oz
12 3/4″ long

October 2, 2015 at 7:04pm
Update: Dixie Harrison Jones is doing great. She’s WAY stronger than I would have been. I am truly blessed to have such a strong and loving wife. My children are blessed to have such a dedicated and loving mother. We, as a family, would be lost without our Queen. As most of you probably know we already have 3 wonderful sons. They have been great through all of this also. We have never had a child in the NICU so this is a new experience. Not being able to hold our little bundle of joy right away has taken an emotional toll on both us. However, we understand that he is in good hands and that God has a plan for this little guy. Everyday he has gotten bigger and stronger. They are very pleased with the strength of his lungs. They are going to airlift Alex to CMC main in Charlotte on Monday. Any baby born under 25 weeks goes to CMC main because they have special surgeons on staff in case something happens. We can not express how grateful we are for all the love and support from family and friends. God has blessed us with such a loving group of family and friends. Thank you to everyone who has called and come by and showed their support and thank you to everyone who has just said a silent a prayer for us. Even if you never let us know that you were praying for us, God has heard you and for that we are thankful. All we ask is that you continue to pray for Alex because he still has a long road ahead. With all the love and prayers he is receiving, I know we will make it. My God is alive and He does heal and I know that all we can do is put Alexander Cooper Jones in His hands and let He’s will be done. Thank you

October 3, 2015
Aleaxander’s 3 older brothers got to visit him for the first time.
Nick wasn’t able to go inside because he’s under 12 and it’s flu season. I was happy he got to see him but it broke my heart that he was outside looking in.

October 5, 2015 at 7:20am
UPDATE : Alex had an ultrasound of his brain yesterday. They check every preemie’s brain for bleeding. Last night the Doctor gave us the results. Alex does have IVH (intraventricular hemorrhage) on the right side of his brain. I will post more details about what this is exactly in just a few minutes, but in a nutshell it’s bleeding on the brain. They grade IVH 1-4 with one being a small bleed and four being severe. Alex has a high two maybe a three. This could affect somethings later on with motor skills and could affect some learning abilities also. The highest risk right now seems to be the chance of Alex having cerebral palsy which mainly affects the correct use of his legs. They will keep a check on this to make sure it doesn’t progress. This bleed could cause a lot of problems OR it could have no lasting affects and everything corrects itself. We may not even know if it has affected anything until he gets older. Physical complications could go unnoticed until he starts to try and walk. Mental complications could go unnoticed until he starts school. We are already claiming healing. Please just continue to pray for our little little guy. He is going to get a helicopter ride at about 9am today to Charlotte.
On a more positive note, Alex has need a small amount of oxygen over the past couple of days, however last night I went to check on him and he was off of the oxygen. He’s lungs are strong and all of his vitals are nice and strong. Overall he is doing great. We are now just praying and waiting.
Dixie Harrison Jones is doing great. She was discharged on Saturday. We have been able to “rent” a hospital room so we’ve been here with Alex the whole time. Dixie is getting around great and she’s healing nicely (even if she’s being a little stubborn lol)
So, here we go on the next part of our journey. It’s definitely going to be a long road but with all the love and support we’ve received from family and friends (and even strangers) and with our Faith in God I know we can do this. No matter what comes our way, we will stay strong and look to God for instruction.
Here we go!

October 5, 2015
Alexander was transported to Levein’s Children’s hospital in Charlotte, NC via ambulance. Mom rode with Alex during transport and Dad followed behind arriving approx. 10:17am

October 11, 2015 at 1:25am
UPDATE : Sorry everyone about not doing these updates faster, our days have been nonstop. So, Alex turned 1 week old on Wednesday. He is still doing well. He is a little wiggle worm. We also found out that Alex is technically labeled as a “micro premmie”.
Alex has been having some issues with a valve in his heart called a PDA. The PDA connects the lungs to the heart. It is very important while a baby is in the womb because it allows blood to flow from the heart to the lungs. In full term babies this valve closes soon after birth and the lungs dry up in order to breath air. In premmies this valve has a tendency to stay open. It has been causing all kinds of problems. It takes blood from the intestines which is why his feeding hasn’t increased. It pumps that blood into his lungs which is why he’s having trouble getting off the ventilator. It also causes a heart murmur and one side of his heart is slightly enlarged because of this.
They have tried 3 rounds of meds that could have closed it… but according to the echo he had on Saturday (10-10) it is still open. So now Alex has to have surgery. It is scheduled for Sunday (10-11) at 9 am. It isn’t considered heart surgery but it is preformed by a heart surgeon.
Surgery details: They will make a small incision on his left side (between the ribs) then “squish” (for lack of a better term) the left lung out of the way. He’ll then find the valve and tie it closed. Alex will be put to sleep for this procedure and then placed on morphine for the next couple of days for the pain. He’s breathing could drop for couple of days until that lung kind of “pops” back into place and heals.
Alex has another ultrasound of his brain scheduled for Monday (10-12-15) to check his IVH (aka brain bleed) to see if it has fixed itself or if it’s possibly going to need to be fixed also.
Please keep Alex and Dixie Harrison Jones in your prayers. We appreciate all the support and outreach from friends and family. We love you all

October 11, 2015 at 9:22am
Update: There was an emergency on another case and since Alex is stable he has been bumped…looking at 11-1130a now

October 11, 2015 at 1:19pm
UPDATE: Alexander’s surgery went great. No complications and it only took about 10 mins! The valve was still wide open so it probably would have never closed on its on. The great thing about having it closed surgically is that it won’t reopen. It’ll take a couple of days for Alex to recover but he’ll be a lot better now. Thank you to everyone who prayed, it hasn’t gone unanswered! God is great!

October 12, 2015 at 5:52pm*********
UPDATE: They did another ultrasound of his brain to look at the IVH (brain bleed).
Just a reminder… They grade the IVH from a 1 to a 4. 1 being small and really of no concern and a 4 being severe with possible brain damage. Alex had a grade 2 on the left and a grade 3 on the right. A 2 just means that there is a small amount of blood in the spinal fluid and a 3 means there might be a blockage and the spinal fluid is building up…
We just got the results and he still has a 2 on the left side but he now has a 1 on the right side! That’s right a ONE! ! God is great! Thank you for all of your prayers! We love all of you!

October 14 at 11:34am
UPDATE : Alex is doing good. He has been moved to a regular ventilator. They are stopping the morphine that he was on because of his surgery. The only concern they have right now is the amount of oxygen he is on. Due to the surgery his lungs are a little inflamed so he’s needing more oxygen. They are starting him on a steroid to help his lungs “calm down”. Their only concern with doing this is the drug he was given to try and close the valve in his heart may have a side effect with the steroid. It could cause him to have a perforated intestine. The risk of this is smaller now because it’s been a week since he received the other medicine. The risk of damage to his lungs without the steroid is higher than the risk of a side effect.
On a better note.. his brain ultrasound was so good that he doesn’t need another one until he’s 36 weeks old! (Corrected age – which means in 10 weeks) I can’t stress enough how grateful Dixie Harrison Jones and I are for all the love, support and prayers we have received. God has truly blessed us with so many people that care and God has blessed Alex with a strong group of prayer warriors. Thank you

October 15, 2015 at 10:10pm
UPDATE : Dixie Harrison Jones finally got to hold Alex for kangaroo care! And on a side note, I changed a huge poopy diaper like a champ!

October 19, 2015 at 930pm
Dixie got to kanagaroo care again (#2)

October 21, 2015
Dixie got to kangaroo care (#3)

October 22, 2015 at 3:35pm
Steven got to hold Alexander for the first time

October 23, 2015 at 10:42pm
UPDATE : Alex has been doing great. He is having a small set back right now So.. Alex has been off the ventilator and on bubble cpap. They use 3 levels for the cpap, 4-6. He started on number 5 and has gone up to 6 twice so far. (The lower the number the better) They have upped his caffeine dose and he is now up to 13ml breast milk. They have removed the PCVC (his IV) due to him doing so well with the feedings. This has made us a little nervous because of how hard it was for them to get it started in the first place. We know it’s better for him because of the risk of infection, but it’s still a little scary to get rid of his “backup”. He is currently on level 6 with the bubble cpap but he’s not on a lot of oxygen so that’s definitely a plus. During hands on care tonight he had a hard time “recovering” from cares. Anytime he is messed with to much his oxygen level drops. During his past cares he has recovered rather quickly. We watched as the nurse tried to get his oxygen and heartbeat back up to a safe level. It was very hard and emotional to standby pretty much helplessly for almost 30 mins while a stranger tried to help your son. He finally came around after being moved to a different position. Apparently he wasn’t happy on laying on his tummy tonight lol. So all in all Alex is still doing well. We just still need prayers for his little lungs this week. We’ll get past this little hurdle and prepare for what comes our way next week on this micro preemie roller coaster ride lol. Thank you all and may God bless you as we stay praying for Alexander

October 25, 2015 at 6:52pm
UPDATE : Alex is having a rough weekend. His lungs are still doing good but the little stinker keeps forgetting to breath. They had to take him off the bubble cpap and put him on a machine called Nava. It uses the same nose piece as the cpap but it can breath for him if he forgets to. They checked his blood level and it was low. They have started him on a blood transfusion and have stopped his feeds and started his fluids back. He has 2 IVs now. If he continues to “de-sat” (drops his oxygen saturation) after this blood boost then they’ll check him for an infection. Dixie and I are trying to stay strong but it is definitely taking an emotional toll on us this weekend. Thank for your continued prayers, we love you all.


weight: 1lb 15oz
13.6″long

 

October 28, 2015

Paw paw Harrison visited for the first tine

October 29, 2015

UPDATE : Alex is still having a rough week. They had to stop his feedings since they gave him that blood transfusion. They wanted to start back with 1/2 his feeds (which would have been 7ml of breast milk) He didn’t digest it very well this time. They took an xray of his stomach and everything looked ok but for some reason he isn’t pooping. So, because he isn’t getting breast milk they have to give him fluids for his nutrition.. Remember the PCVC (his IV) that we were concerned about them removing.. well it’s back. They had to put another one in to give him the fluids. Luckily they didn’t have a problem putting this one in. On top of the issues with his stomach he is STILL having episodes where he “de-sats” and his heart rate drops.

They have taken him off the NAVA (which allows him to breathe on his on and only helps him when he forgets) and put him back on the ventilator  (which constantly breathes for him but lets him take a breathe on his on also) The only reason we didn’t want the ventilator back was because they had to reintubate him (breathing tube back down his throat). But Alex’s little nose was getting sore because the NAVA uses the same nose piece as the bubble cpap. So, hopefully this will give him time for him to get stronger and give his little nostrils a break. We just need him to snap out of it and start breathing and pooping lol!

Also, I started back to work this week so Dixie Harrison Jones is in Charlotte with Alex by herself.  I am very blessed to have such a wonderful woman as my wife and the mother of my children. She truly is the Queen of our family and we would be lost without her. Please pray for her to help give her the strength she needs to deal with these stressful times.

Alex is starting to do better now that he is on the ventilator and they should start his feedings back slowly. They took some blood today to check for infection and possibly pneumonia. The doctors feel pretty confident that it’s just excess air from the NAVA that they are seeing but they just need to make sure. Please continue to pray for him.

Thank you all and God bless!

2lbs.

 

November 1, 2015

2 4 lbs

13 3/4″ long

November 9, 2015 at 9:58pm

UPDATE : They put Alex back on a steroid and it has helped him a lot. He was having some problems with the ventilator tube so they removed it. They had trouble putting it back in so they had to use a smaller tube because his throat was swollen. He kept that tube in for a couple of days before he decided to take it out himself on Monday November 2nd! Lol After that they decided to try the bubble cpap again. He is still on the bubble and doing great. The steroid has been a game changer but they’re starting to take him off. It has helped but it’s still dangerous to his intestines. He has also started pooping again! Lol So everything seems to be ok with his tummy. Also, our little man is now up to 2 lbs 11 oz! He is growing and still squirming lol! He’s up to 18mls of breast milk every 3 hours right now. He’s going up to 21mls tomorrow (which is the max for his weight) They have also removed the PCVC (which is the IV that goes to his heart). So, now all he has is his feeding tube and the bubble.
All in all Alex is doing way better this week. Dixie Harrison Jones has stayed by his side everyday and is still finding time to spend with our other children. She is amazing and I love her more than ever! She’s also beautiful but that’s just a bonus lol.
THANK you to all that have prayed for Alex and our family! God is great and He’s doing amazing things! We have had an up and down ride so far but thanks to all the support from family and friends it has been easier. We can never express how truly grateful we are, so please just accept this thank you and know that you have changed our family forever.
Thank you for your continued prayers and God bless

November 14, 2015

UPDATE : Alex is having a rough day today. His oxygen level keeps dropping and his heart rate is dropping also. They’re checking his blood work to see if something is wrong. He just got moved up to level 6 on the bubble sipap because he keeps desating. Please keep him in your prayers.
On the bright side he is gaining weight and growing well. He is now up to 2 lbs and 14 oz! He has been doing so well lately with everything. They think he’s just getting kinda tired. So, we just need him to regain his strength and keep getting stronger.
Thank you for your continued prayers and God bless you!

Here’s a picture of him smiling!

 

November 15, 2015

UPDATE : Thank you all for your prayers! Alex had a good night and a good morning! The bloodwork came back and they said it all looked good. They think it’s just reflux from the feedings so they put him on continuous feeds (they slowly feed him constantly so it doesn’t put as much stress on him). Being on continous feeds and moving his bubble sipap up to 6 has helped him.
Alex is also getting his 1st eye exam today! They have to check him weekly starting today to ensure that his eyes are developing properly.
Thank you all for the love and support. We are in the house of the Lord today and we just can’t stop praising His name! God is great and He does great things through His children.
Thank you all and God bless!

November 25, 2015 at 9pm

UPDATE : Please read this whole update, it has an important Holiday message.

Alex’s first eye exam went well. His veins haven’t really developed enough to cause a problem yet. He has another exam scheduled in a couple of weeks.
He’s still having a little problem pooping, so they started him on pear juice. He has also started retaining water. Poor little guy looked swollen all over. They ran some tests and they all came back clear so they’re not sure exactly why he started ‘puffing’ up.They started him on a diuretic (water pill) called Lasix and it seemed to help pretty quickly.
He’s main problem is still his lungs. He was still having some desats (low oxygen in the blood) so they started him back on the steroid and put him back on the NAVA machine. (The machine between the bubble sipap and the ventilator ) This combo has helped him go down on the amount of oxygen he needs.
The plus side is that he is still tolerating his feeds and gaining weight. He’s already up to 3 lbs 12 oz (and that’s before the Holidays lol)
Speaking of Holidays, HAPPY THANKSGIVING!
Our family has a lot to be thankful for. We are thankful for all prayers and support that we have received. We are thankful for a loving God with the power of healing. We are thankful for our family and friends. We are thankful for Alexander and this crazy journey that he has taken us on. Don’t get me wrong, if we could have avoided this situation, we would have. However, like our Pastor Jody Almond said “God is blessing us through the brokenness”.
Not only has this journey given me a closer relationship with God, but it’s allowing me to share the love of Jesus and the comfort of pure Faith with others. People ask me how am I able to deal with such a small baby and how am I dealing with all the medical issues. That’s when I tell them that we just pray and put it all in God’s hands. When you tell people this it gives you an opportunity to tell them just how great our God truly is.
So, this Thanksgiving, even if you feel like there is nothing for you to be thankful for, just give thanks for Jesus. Put it all in God’s hands, let him heal you and may you find a blessing in your brokenness.

Thank you all for your continued prayers for Alex and God bless

December 8, 2015

UPDATE: Alex weighs 4lb 12oz 17 ” long now!!
They have moved him on to Hi Flow Nasal Cannula on Saturday and today he got moved down to Level 3. His nurse was given the go ahead to introduce the bottle if he was showing signs….so today at his 3 pm feeding he guzzled down 32 ml…the nurse said he burps like a man….LOL!
They will slowly give him a bottle once a day…don’t want to tire him out because feeding time can easily tire him out from all the energy he uses.
But he’s one step closer to coming home!
Once he’s on Level 1 of the Nasal Cannula that is Low Flow and meets other requirements he can come home. However, he may be on oxygen when he comes home.

So please keep the prayers coming for Alex to keep growing big and strong and that he can eventually be able to breathe on his own. We are so hoping he can come home soon …Christmas would be great!
But there’s a light at the end of the tunnel and before you know it our little Miracle will be home with his Mommy and Daddy and his 3 big brothers anxious to see him!
Again thank you all for such overwhelming love and support and power filled prayers for Alex and the family….
we so appreciate it all from the bottom of our hearts. : ) ♥

 

December 17, 2015

Moved to the Progressive unit

January 6, 2016 day #98

UPDATE : So.. Alex has been growing and growing which I’m sure you’ve all seen in his pictures. He is now 6 lbs 15.6oz. He still only takes a full bottle with his loving mommy Dixie Harrison Jones. We really hope that we are going to be headed home soon. He was having some issues with his feedings where he would make a gagging face but not throw up. They concluded that he has a reflux issue. They switched his bottle to a Dr.Brown bottle and started him on a medicine for it. He worked his way all the way down to 0.1 on his oxygen but he started breathing a little harder so his back up to 0.3 for now. His last cranial scan still shows that the bleed on the brain he had at birth is shrinking! (Great news) His last eye exam was still good, next one in about 2 weeks. And his hearing test came back clear. All in all he is getting bigger and stronger.
The only real hiccup so far is that when they did the surgery to close the PDA valve (valve that connects his heart to his lungs) they did paralyze one of his vocal cords. They did a test today where they xray his throat as he eats to see if any food goes into his lungs because of the damaged vocal cord and it did a little bit. They switched his nipple to a specially designed ultra preemie nipple to slow the flow. It seems to have worked so hopefully this will not prevent him from coming home. If the vocal cord is just damaged it could heal itself but if the nerve is dead then there isn’t anything they can do. If it doesn’t heal then his voice will just be a little softer for a while and when he gets older he may become winded faster then other kids. Not like an asthma attack, just may run out of breath a little faster.
Thank you again for all the love and support we’ve received over these past 3 months. We know that God has a plan for Alexander Cooper Jones and that Alex has a lot of people praying and cheering for him.
Thanks and God bless you!

 

January 12, 2016

Alex came home!  Still on o2 and a monitor but doing great!

 

February 15, 2016

8lbs. 11.6oz

 

 

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