Still growing!!

Cooper is getting SO big! He now weighs 3 pounds and 9 ounces!! It seems like he is putting weight on so fast! Well, he is a Jones! LOL! You can see his double chin in the first picture! He is getting older and has times when he is awake. These are my favorite times! He will just look around and smile! I love talking to him during these minutes! He is so precious!

We were moved back to Baptist NICU on Monday. The doctors came in Monday morning and turned off the nitric and said they had an opening in the transport and could take him that day. It was fast! The second picture shows his transport bed! It is really cool. It has all the equipment of his room condensed for travel. His transport team was fabulous! They got him all packed up and we met them at Baptist. The trip from door to door was 7 minutes! We got there during shift change, so we had to go get dinner and come back before we could see anyone.

When we finally got back there, it was like a family reunion!! Everyone was so happy to see him!! They have just gushed over him for the last few days! We even got the same primaries back! No one could believe how much he has grown. It is nice to be back! We will miss Vanderbilt too! We met some FANTASTIC people there. I have never been so torn at a decision, but we felt like Baptist had a family atmosphere that we missed. (Vanderbilt was at a disadvantage! We forged relationships with Baptist for a month before getting moved for surgery.) Anyway! Cooper is loving all the extra attention!!

He did not love his ambulance ride. He did fine, but had to go up on his liters on the vapotherm. He was breathing hard after the ride, so they gave him some extra support. He will be weaned down in the next few days. We were expecting this as well. He was expected to have some setbacks after coming off the nitric. He is doing great! We are so proud of him and praise God for him daily!!

He is getting so BIG!

We are so proud of our little Cooper! He now weighs 3 pounds and 3 ounces! He is 16 inches long! He is growing!! As you can see Cooper got his very first bath on Friday!! He was free of IVs so it was the time to dip him in a bath and scrub him up! He had been sponged off until now. He was very unsure at first and then decided he HATED it! I couldn't help but laugh (and take pictures). I got to help bathe him, which was A LOT harder (and scarier) than I thought! Boy do they get slippery! I was glad to have a nurse there to help hold him and teach me how to bathe him properly. That is one of the great things about NICU life; you get someone who teaches you how to do the every day tasks like bathing and diaper changes, and you get to practice with their supervision!! I am glad that I am in a place where I can find the good in all the chaos!!

We have been given the choice to stay at Vanderbilt or go back to Baptist. After MUCH consideration, we decided to go back to Baptist. There are MANY good things about both places, but Baptist just has a family atmosphere that we miss terribly! Several of his nurses have even called my cell to check up on him since we have been gone! They miss him too! We are looking forward to the move on Wednesday or Thursday.

Cooper was doing so well this last week that the doctors decided to come down on his flow on the vapotherm. The "flow" is the amount/force of air that helps keep his lungs inflated. (ISH) He was on 5 liters and came down to 4 on Saturday. We expected him to go up on his oxygen necessity, but he didn't! So on Sunday they came down a bit more! He is now on 3.5 liters! (That's good!) We are very proud of our little man!

I changed my profile picture to my new favorite picture! I caught him smiling!! It was so sweet! (probably gas but sweet anyway!) Thanks so much for your prayers! We are overwhelmed by how blessed we are with wonderful friends!!

Baby shower!!

Saturday was my first baby shower for Cooper! It was so much fun! My Monday night small group and Wednesday night bible study gals got together and organized everything. It was a tailgate/sports theme because we are decorating Cooper's nursery in sports. It was so much fun! We had hot dogs, different sports ball shaped mints, and a football shaped cake. Everything was wonderful!! I am so grateful to everyone who came to share in showering Cooper with gifts. I have the best people in my life!! Many thanks to MY GIRLS for setting everything up! It was so much fun getting to catch up with everyone and laugh! It was just a wonderful day!!

Kevin and I unloaded the car and headed back to Vandy to see our favorite little guy. I FINALLY remembered to bring back his blankets I had washed, so our nurse decided to change his bedding. That meant I got to hold him! It was the perfect ending to the perfect day! I held him and talked to him about all the cool stuff he got that day and he just relaxed and slept. It was absolutely precious!

Cooper now weighs 3 pounds and 1 ounce!!! He is getting bigger! He still has A LOT to accomplish before he can come home. He has to learn to eat and breathe on his own. He is 34 weeks (gestational age) which is about the time they start the sucking reflex. They would normally start him to try the bottle this week. His vapotherm is set to a flow of 5 (which is basically the force with which the oxygen goes up the nose keeping his lungs open), which is too high to allow him to try a bottle. He has to come down significantly before they will attempt it. So the plan for now is to get him to grow, which will allow his oxygen necessity to come down, allowing him to come down on his flow. He is on a mixture of breast milk and 30 calorie formula to help him put on some weight. Once he comes down on his vapotherm, they will try him on feedings. So for now he is getting a pacifier to practice sucking. Preemies have a nasty habit of sucking but forgetting to breathe! So he has been practicing sucking a pacifier (which is almost as big as his face! I PROMISE TO UPLOAD PICS SOON! I am having camera issues!) He is so cute with it. He does pretty well for a while, then his numbers start falling and we have to take it away from him. It is so sweet!

This has been a weekend where I am again reminded of how incredibly blessed I am! My best friend, Erica had her son Wednesday afternoon. He is healthy and wonderful and I can't wait to meet him! I got to spend time with Kevin's family Friday night at his cousin's baby shower. She is also expecting a son due in March. Cooper will have so many friends to play with! Thanks again for all the prayers for our little miracle! We love you all so much!

Updates

Well Cooper has been off the ventilator for 6 days now and is doing GREAT!!! He moved from the ventilator to the cpap to the vapotherm! He is also on full feeds and getting extra calories to help him grow! What a big boy!!


About Saturday we started noticing that he was acting lethargic. There had been many changes over the last few days, so it was hard to tell what was the cause. He is such a fighter and he fought the latest changes, which made him very tired. We assumed he was catching up on his sleep. Sunday morning he was still the same. The nurse convinced the doctors to run several blood tests to check for infection. The preliminary tests showed no signs of infection, but he was no better. They drew blood for a blood culture which takes some time to come back, so we waited. They were feeling like it could be the medication he is on that is causing the lethargy. When he was switched to full feeds, they switched his meds from IV to oral. When you make an IV to oral change, the dose is doubled due to how the body metabolizes it. The doctors felt that he might be getting too much, causing the lethargy. His dose was changed and he seemed a bit better, just a bit. Then the doctors called us Monday night with the news that the blood cultures came back positive for staph and they started him on some antibiotics. Staph can be scary, but there are several types and we are still waiting on the culture to grow more to find out which kind he has. By Tuesday afternoon he was more alert and responsive.

Wednesday morning I woke up at 3:45 am with a fever. Seriously, what are the odds??? I ran a fever the whole day. It ranged from 99.9-101.2 with medication. Of course I cannot visit Cooper with a fever and have to wait 24 hours after the fever breaks. It finally broke at midnight! Unfortunately, I could not visit until the following midnight. Luckily, our favorite nurse was on duty and our moms could go sit with him during the day until Kevin could get there after work.

Back to Cooper...He gained weight!! He now weighs 2 pounds and 15 ounces!! That is almost 3 pounds! Kevin says that he is acting like he is feeling much better! He is responsive and alert and the active baby we know and love!! We are so glad the medication is working! He is growing stronger daily! Thanks for your continued prayers!

No Ventilator!!

Well it has been a big couple of days!!! The steroids have been working! The doctor decided to take Cooper off the ventilator again on Thursday. They decided to give Cooper caffeine to help with the "spells". At 2:00pm they extubated him and put him on cpap. On Monday they went straight to vapotherm and decided to try him on the cpap machine this time. It seems to be working!! He was immediately upset (you would be too if you all of a sudden had air rushing up your nostrils and a crazy mask on your face!! Bless him!!) but seemed to calm down more so than last time. I held his little hand and talked to him as he adjusted to the machine. They did a blood gas to test his CO2 levels 2 hours after the change, and it actually went DOWN!! We were so excited and proud of little Cooper!! They took the ventilator out of the room! We are praying it stays out!!

Of course it snows the day they are taking him off the ventilator! We didn't want to leave him, but we didn't want to get stuck in a ditch, so we left for home. We warned the nurse that we would be calling several times throughout the night and she welcomed it. Every time we called, she had better news for us! He kept going down on his oxygen and his oxygen saturation remained high! Whew!! Until the 5am blood gas and x-ray... the CO2 levels went up quite a bit and his x-ray looked more hazy than usual. The doctors decided to watch him and repeat the blood gas at 5pm. We held his hand again and talked to him about how to exhale! It seemed to work, because at 5 the CO2 levels had gone down to an almost normal level!! Praise God!! They are going to leave him on the cpap and test again in the morning! I just called and he is doing good!!

More good news, Kevin got called back to work!!! He goes back to work on Monday. Originally he was going to have to take a job with less pay, but they called back and offered a job that makes what he made when he left! Very exciting!

All this points to God's timing! I am the WORLDS WORST at being patient! I want what I want when I want it. Does that sound spoiled?? LOL!! Is it a coincidence that Kevin gets called back when I am not working and when things are somewhat settled? God's timing is PERFECT! I am learning that a lot lately! :-) Thank you God for all the blessings the Jones family has received these past few months!

Another BIG day...

Yesterday was another BIG day for little Cooper. I got to hold him for the second time in his life! Katrina, Cooper's nurse, swaddled him and laid him on my chest. I started talking to him and he was squirming and trying to move his head (moving his head is bad when on a ventilator, the tubes can come out!) Katrina noticed his squirming and said "He is looking for you!" So we adjusted him so we could see each other eye to eye. I kept talking to him, mostly about silly stuff, and he just looked right at me! It was too precious!!! He then fell asleep and laid comfortably for the whole hour I got to hold him! I was so excited!!

The neonatalologist came in a little while later and saw the settings on the ventilator. We decided to go ahead with the steroids, and they started his 8 day dose on Saturday. Cooper had been weaned down quite a bit and was tolerating the low settings beautifully! He was also breathing quite a bit over the ventilator. The doctor saw this and decided that he was ready to come off the ventilator! I was like "NO!! I am not ready!!" It is ironic, actually. As they were extubating him (pulling his tube out) I was thinking about not being ready. I was not ready for him to be delivered and I was not ready for him to come off the ventilator! I then realized it was NOT about me! Is Cooper ready?? I might NEVER be ready for any of his first milestones.

They put Cooper on a vapotherm. It is a steady flow of oxygen that goes up the nose. He did NOT like it! He was so cute! He was arching his back to get away from the air. Bless his heart! The doctors ran a blood gas test to check his CO2 levels 2 hours after putting him on the vapotherm. The results were not good! He went from 60 to 99. The doctor came back in and said that they needed to put him back on the ventilator. I was so disappointed, but I want what is best for Cooper. They asked me to leave while they reintubated him (it is a sterile procedure) so I went downstairs for dinner. (Kevin is having dinner with Tennessee Titan Cortland Finnegan at this time, so I am there solo!! He arrives just as they are reintubating him.) When we come back, the doctor meets us at the door and tells us that Cooper has his own plan. They wanted to try something else. They rigged up (invented) a Cpap machine with the ventilator together. The ventilator was giving him 5 breaths a minute to help push out the CO2. He absolutely hated this one!! He was having such a hard time resting. He would get so angry and ball up his fists and turn red, then he would tire himself out and fall asleep. He would wake up and start this whole process again. It was SO HARD to watch!! I knew he was not resting very well!! His blood gas an hour later was better. They ordered another blood gas for 2 hours later. We waited at the hospital until 1:00am for the results of that blood gas. It was a little worse, but they decided to watch him. We had to leave to get some sleep. It is always hard to leave Cooper at the hospital, but it was especially hard this night!

I called early the next morning to check on him. It turns out that Cooper's CO2 levels kept going up so they had to put him back on the ventilator at 4am. He was resting comfortably. When we got to the hospital after my doctor's appointment, he was sleeping. I got to help with all his care today, but we decided to let him sleep. He was absolutely exhausted!

He is still getting his steroids. They will wean him off the vent until he is ready to come off. Hopefully he will do better next time! It was good for him to try! We are so proud of our little man!

Happy New Year!!

Happy New Year everyone!! We had a great time ringing in the New Year with some friends from church! We played some Rock Band and Wii sports. It was a good time!

Cooper is doing good. He is still up and down on his stats. They started running some tests to see if they can figure out why he is so up and down. Originally we were told that the PDA valve being open was the reason for his instability. Since the surgery closed the valve, he is still somewhat unstable... They finally did an Eco to make sure the valve is closed and the heart is good; it is. They ran some blood tests to check for infection; negative. They sent off some of his secretions to see if there is an infection there; still waiting. They changed his tube for the ventilator to make sure it was not blocked...NOTHING... except his lungs. His lungs are still quite immature. He is technically supposed to be in my belly still growing. He was not to be born until February. He was 15 weeks early!! I am trying not to rush him!! But his instability keeps me from holding him, and kissing him!! It sounds selfish, but I need to hold him!!

So, we are just waiting on him to mature. The current thought is to grow him and his lungs will grow. Nutrition is the best medicine at this point. They are also throwing around the idea of giving him some steroids to help grow his lungs. There are some potentially severe side effects. Some studies have shown that steroids can delay the development of the brain if given too young. The doctors at Vanderbilt feel that Cooper is old enough and the dose will be smaller than those in the studies. They feel that the benefits will out weigh the risks...?????????? If the steroids work, he will get 7 doses in 7 days. The doctors will aggressively decrease the settings on the ventilator until he is off altogether. He would still be on some form of oxygen, but off the ventilator. What to do??????? We are praying about this decision.

He is the sweetest thing! I so enjoy our time together. Today, I just talked to him about all the things waiting for him outside of the NICU. He stretched and opened his eyes and then went back to sleep. I hope he will be more interested when he comes home!! :-)