We Finally spent the entire night with Nathan. He must have been happy we were with him because he stayed up most of the night!!!!! I believe he has his days and nights mixed up!!!!! He was up from about midnight until around 4:00am. He didn't really fuss, unless the pacifier flew out of his mouth, he just layed around wanting to play! We didn't sleep much but it is a good feeling to be able to take care of him by ourselves
His is now being fed 50cc every three hours during the day and he is on continuous feeds over night. We are learning to use pump for his feeds and they will begin going over his meds today. After all the "stalling" he has done the past 7 weeks he is sailing now! Hopefully he will continue to sail through!!!!

Brandy we are in the same room Drew was in!!! She must be sending all her good left over recovery vibes!! Tell her they are working!!!!!
Julie

Moving up!

We are moving up to the sixth floor this morning!! We will be able to stay in the room with Nathan all the time now. He had a really good weekend. He has been alert and very comfy. He has done nothing but smile all morning. I think he has finally made up his mind to get better and GO HOME!!!! He has gained weight and is up to 6lbs 8oz. I don't know how long until they discharge him but as long as he keeps getting better and we can stay with him we feel better! Hopefully by next week we will be at our house and have both of our boys under the same roof! I know Austin misses his house and his baby brother! There is finally a bright light at the end of this LONG tunnel.

Thanks to everyone for being so wonderful and supportive to us. We couldn't have held up without the love from our family and friends. Ya'll have been wonderful! We just keep praying each day that Nathan continues to keep getting stronger!

taken Friday Feb. 24th 2006

FINALLY!!!!! PICTURES!!!!

Hello to all! I have finally learned how to post pictures!!!! Now everyone can see what he looks like now!!!!

We are scheduled to move to a room on Monday!!!!! They actually would have moved us this afternoon but I HAVE to go home to see Austin in the morning so we all decided to wait until Monday to make the move. I have missed too many of Austin's basketball games and he has made it clear I can't miss this one!!!
Nathan is still doing well with his feeds and seems pretty comfrontable. He even smiled a little today. Right now they say he weighs 6lbs 2oz. They want to be sure he is beginning to gain before we leave here. After we move to the peds floor they say we should be able to go home in about a week. Lets hope so!

BABY STEPS!!!!

Nathan is moving along now one baby step at a time! They took his breathing tube out on Wednesday. Yesterday they began feeding him and he seems to be handling everything well. There is some talk about moving us to a room on the peds floor where we can stay in room with him and begin our training on how to feed him through the tube. Once that happens we will be able to bring him home!!!!
He looks really good now. He has good color and is becoming very active. Sorry I haven't posted any pics, Things have been a little crazy! Hopefully I'll post some this weekend.
Thanks to all for your comments and prayers.

Hello to all! We are still here and Nathan is doing okay. The past few days have been eventful and exhausting. Monday evening Nathan began having trouble breathing....Even with the vent. Yesterday morning his x-ray showed fluid build up around the outside of his left lung. They inserted a small tube called a pigtail into his side to drain the fluid. They drained 80cc of fluid off that one lung. They were still weening the vent and had plans to extabate. However, Nathan was VERY fussy most of the day and he keeps retracting so bad even over the vent that his docs decided to wait another day. They gave him pain meds last night to help him rest. They plan start the process over again today and he may be extabated by this afternoon...then again maybe not!!!! We will just have to wait and see what our little man does!

Trying Again

Nathan's weekend was pretty uneventful. Today they began reducing all sedation meds again. He was awake a little off and on. They may attempt to extabate again tomorrow depending on how well he does. Hopefully he will be ready this time! We will update.

update

Yesterday afternoon Nathan began having trouble breathing on his own. His oxygen levels in his blood were too low so they had to but him back on the ventilator. They once again have him completely sedated to allow his body to rest. We are not being told how long they will keep him like this. They say it may be a few days before they try again. I will keep everyone updated as much as possible.

BREATHING TUBE IS OUT!!!

Nathan got his breathing tube out today!! He is off all sedation medicine and is doing very well. They plan to start feeding him either tomorrow or Saturday. His incision is healing fine. He hasn't been awake much yet. We are not really able to touch him much, he is uncomfortable when he is awake so we try to keep him asleep! His respiratory rate is a little lower than it has been but it is still higher than the docs want it. He really looks good. Maybe soon I can post a recent picture but I will have to learn how to do it first!!!!!! I will try soon!

Surgery Completed!!! Doing Fine!!!

Nathan had his surgery this morning at 11:30. It lasted about three hours. They were able to put in what is called a button which allows us to attach tube when time to feed and remove tube when he is finished eating. He did very well during surgery and is now back down in the PICU recovering. We did see him open his eyes and move his arms and legs while he was coming out of anesthia. They have him sedated now and will keep him this way for at least a full day if not longer. They want his body to rest as much as possible. We are not allowed to touch him for a few days, he needs to rest. The will probaly begin feeding him over the weekend. At this point his recovery time is up to him. We will have to have patience and allow time to let his little body advance at it's own pace.

Thanks to all who continue to pray for Nathan and all of us.

Quick update

Nathan will be going into surgery around 10:00 tomorrow morning. The surgery will last about two hours. He will be in the PICU after and will be completely sedated for at least two days following surgery. He spiked a fever this afternoon but now his temp is holding steady so everything is still a go. We will update everyone tomorrow evening as to his recovery.
Thanks to all who are praying so hard for us.

Doretta thanks for the comment..I did get it. Problem should be solved. Comments were blocked for some reason but I think I fixed it!
Thanks!!!

Surgery Date

Nathan is now scheduled to have his feeding tube put into his stomach on Wednesday. They are also going to band his esophagus with a Nissen to prevent refux. He will get all feedings from tube in stomach for next few months. This will allow him to get the calories he needs to help him grow. Eventually we will be able to attempt to bottle feed but his respiatory rate will have to come down first as it is still way too high. He will be re-intabated for surgery and will stay on vent for at least two days after. He will also be sedated for a few days while his body recovers. He looks so good today and he is SO alert it is hard to cope with the idea of another surgery and recovery. I know this will be nothing compared to what he has already been through and I know it has to be done but it is still another surgery on someone so little. However it will bring us one step closer to coming home! They say it may be about two to three more weeks...we will see.
Please keep Nathan in your prayers for a safe surgery and fast recovery. I will try to update on Wednesday as I will be in NICU holding my angel all day tomorrow since I will not be allowed to hold him for a few days!!!!

UPDATE

Hello to all....Nathan is doing well. His breathing hasn't changed much, still very high. He is tolerating feeds better. He had a upper GI study done on Friday which showed he does have Reflux. They are discussing having to put tube into stomach to feed. This would be a relatively simple procedure and would be the best way to get him his feeds and allow him to retain calories and help him grow. However it is another surgery. We are waiting to get full details from the general surgeon hopefully today. Yesterday they took him off of oxygen and he breathing fine. He has been very alert and happy this morning. Hopefully we will have more news to share by tomorrow.
Thanks to all!!

One month and counting!!

Nathan is still at Children's in New Orleans and we do not look to be transferred to Baton Rouge any time soon. Nathan's respiratory rate became very rapid again on Sunday. Monday he decided to pull his feeding tube (that goes through his nose to his stomach) completely out. After three attempts by nurses to put back in Dr. Pettit ordered to stop feeds and let him rest for remainder of day. Tuesday his lungs had fluid due to the battle over feeding tube the day before so now main focus is getting that cleared up. This morning he sounds a lot better and seems to be doing well.
We now have a computer up here so I should be able to update more frequently. Hopefully I will be able to put a recent picture posted soon!
Thanks to everyone for there prayers and support.
Julie and Sal

• Just to catch everyone up on what our little angel has been through and progress he has made I will try to summarize the past month as best as I can. Nathan Paul was born on Wednesday January 11th 2006 at Womans Hospital. He weighed 6lbs 6oz and was 19 inches long. Thursday January 12th he was diagnosed with Coarctation of the Aorta (COA) and transported to Childrens Hospital in New Orleans. He spent five days in NICU before undergoing surgery to fix COA. Surgery went well. They were able to go in to heart from his side which avoided having to open his chest. From there he went to PICU unit for recovery. At this time he is off the vent and most medications. He also has a ASD which is a rather large hole in the upper part of his heart which may warrant another surgery to correct. They are not wanting to correct ASD at this time but will have to monitor closely. They have began feeding him through a tube and he is tollerating feedings well. His respirtory rate is still higher than it should be and we are waiting to hear what will happen next. There is a possibility that we may be transferred back to Womans Hospital in Baton Rouge sometime soon but we are not sure how soon. He would still be in the NICU there and would be in complete isolation and would still not be allowed any visitation other than parents and grandparents. As much as I know everyone would like to see him they cannot allow ANY risk of infection as he is still in a delicate state. We would like to say how thankful we are for everyones thoughts and prayers. This has not been easy on any of us but Nathan is a fighter and God is proctecting him. Please keep him in your prayers and I will update this site as often as I can. Hopefully I can get more pictures up soon! Thanks to all.................Julie and Sal

Nathan Paul

Nathan is very alert this morning. He was able to be held and cuddled by mommy for a little while. His respiratory rate is a little lower today. We are still waiting to hear what the next step will be. He is up to full feeds and tolerating well. I will come back to give full update on our precious baby Nate’s condition and post all he has been through a little later.
We thank everyone for all the thoughts and prayers.