This Article on Children's Hospitals came out in August (Yes it took me a while to get it scanned and updated) and it featured the Kostaridis Family (minus Dad) and Dr. Stolar, who performed Gabriel's hernia repair.
I know its been a while since I have updated and to be honest alot has been going on...Gabriel is going better and we had a pretty good August and September. His major issues seem to be feeding, and he continues to get his milk through the G-tube. He isn't talking much by bottle but the good thing is that he doesn't seem to have an oral aversion. He sucks on his pacifier and puts stuff in his mouth. Our major focus is on him gaining weight with the hope that it will make him stronger. He is almost 15lbs and has started eating cereal. They are small steps but they are small steps foward to which we are thankful.
He did give us some scares during these past two months and he even got a slight pneumonia a couple of weeks ago, but thankfully he did not have to be hospitalized and hopefully that is past him. The funny thing is that Dad and Big Sister Demi have had as many trips to the Emergency room/Doctors' Office than Gabriel. We both got mosquito bites that got infected and all swollen. I guess when it rains it pours.
Gabriel has been home since July 16th and he is doing very well. It appears that the surgery has healed well and he is more comfortable now. The Reflux has all but disappeared and he is taking the bottle again. Today he does about 15-25 ml by bottle three times a day. Which is great considering the last couple of weeks before his surgery he wasn't taking anything.
Gabriel also had a bunch of follow appointments with his doctors: Surgeon everything was healing well, he had a Swallow test done and the Fundo is working well. Food goes down and very trace amount come up. Our GI doc put him on a feeding schedule so his goal is to hopefully be taking 48mls, so we can start compressing. He had a Echo-Cardiogram done and his Cardiologist found absolutely nothing wrong with his ticker. He had a neurology appointment and they did not find any neurological problems, although she said he needed to build up his strength and suggested we get him OT (Occupational Therapy). He is already getting PT (Physical Therapy) and Speech and Swallow Therapy.
Overall he looks great and we hope he continues this forward progress.
Gabriel Athan had his surgery Wednesday morning at 11:00am at Columbia Presbyterian Children's Hospital. He had a G-tube inserted and they performed a NissenFundoplacation on him. Hopefully the Nissen will reduce the amount of Reflux coming up and give him some relief.
Gabriel is scheduled to be released tomorrow afternoon.
Gabriel had an appointment with his surgeon, Dr. Stolar yesterday as a followup to the GI appointment we had last week and we have all come to the conclusion that it will be in his best interest to have a G-Tube inserted. While he is in there Dr. Stolar believes that a Fundoplaction will be to Gabriel's benefit as well. These past two weeks his reflux has gotten worse, he is very irritable and he is practically not taking the bottle at all anymore and his feed compression has slowed down. The NG-tube hasn't been that bad to this point, but he is now getting to the age where his hands constantly are grasping for it. We put gloves on his hands but that isn't fair for him either and it decreases his motor skills. So we are planning on going in for surgery on July 14. Otherwise he is going pretty good.
Gabriel went to his GI appointment today and he is almost at 12lbs. He is about 3% height and weight for his age. The positive is that he is growing within his own curve. They broke the news to us that the G-tube and Nissen surgery is most probably going to happen within the next month. We have to schedule an appointment to see the surgeon. While he is growing and taking some bottle feeds by mouth, the severe reflux and slow progress make the surgery inevitable.
We even got todrop in to the NICU and visit with some of the doctors and nurses in the NICU today. They are such wonderful people and it made them happy to see him progressing so well.
Enjoy the pics that we took of Gabriel and Demetra the other day.
Gabriel Athan weighs 9 pounds 4 ounces at his doctor's appointment yesterday. He is still on continuous feeds of fortified breast milk (1 Ounce per hour) for 21 hours. He is taking about 5cc twice a day from the bottle. His reflux is still very bad though. Hopefully I will be able to get some pics up this weekend.
Gabriel was released from the hospital yesterday (May 1st, 2008.) He is currently home and resting. He is still on continuous feeds with a three hour break during the day. Hopefully this little stay in the hospital was his last. We are all glad to have him home.
Thanks to everyone for their well wishes and prayers.
Gabriel has really bad acid reflux and they are trying to get it under control by giving him Previcid and Reglyn. It still gets him very agitated. Just imagine how much we as adults suffer with a bit of "heartburn" his is probably 10 times worse. They have him on continuous feeds with a three of hours of "break" during the day.
Hopefully they will let us go home by the end of the week.
Gabriel was having difficulties with his bottle feeds so last Thurs (4/10) we stopped feeding him by bottle and were using on the NG-tube. However his reflux was getting worse and he was having "episodes" of discomfort that would last over an hour at times. When he wasn't having these "episodes" he was doing just fine. He is gaining weight (7lbs 10oz) but his "episodes" are getting worse. Upon his visit to the GI doctor they witnessed one of his "episodes" and he immediately admitted to the hospital for observation.
He is currently on Previcid to help his Acid Reflux which everyone believes is the underlining cause of all his discomfort.
Gabriel Athan was discharged from the hospital on Friday April 4th, 2008 at 10:30am. He spent his first night at home sleeping in Mommy & Daddy's bedside. Although it was quite uneventful for him...Mom & Dad barely got any sleep. Thankfully Demi slept the whole night, she woke up at 7:00am asking to see Baby Gabriel. He is currently feeding every 3hours approximately 2ounces (65ccs.) That's 8 times a day!!! Four or five times a day we try to give him a bottle but he only manages to get half way through (30-40 ccs) before he gets tired. The rest of his feedings are done with a nose tube (NG-tube)
We are blessed to have him home with us so much earlier than initially expected and at such a healthy state. We would like to thank the doctors, nurses and staff at NYC Columbia-Presbyterian Children's Hospital for the care and support they provided to our family.
On Thursday they tried to give Gabriel the entire feed by bottle and he wasn't quite ready for that. His breath rate went really high and he looked tired. He struggled a bit so they decided to give him a break and not give him the second bottle feed. The rest of his feeds are still given by his nose tube.
Starting Monday Gabriel was getting compressed feeds. That means he was getting fed every three hours. On Tuesday Gabriel received his first bottle feed. It was only 1/2 ounce and it took him about 1 hour but it went down...and stayed down. They will give him two bottles on Wed.
Gabriel is continuing to do well. His numbers remain stable and he has tolerated his feeds well so far. On Tuesday we got moved to the step-down NICU. This is where they keep the non-critical babies. While this is another step towards going home, we aren't so happy up here. The level of care is the same as the NICU except there are less nurses for each baby. I think up here the ratio is 1 nurse to 5 babies. In the NICU at most its 1 nurse to 2 babies. But as everyone keeps saying you are almost home.
Dear Friends and Family, Since Gabriel Athan was born on March 2, 2008 we have been on a wild roller coast ride. We have had any ups and downs the past couple of weeks, but it looks like the immediate hurdles have been passed and Gabriel is coming along "exceptionally well" according to his doctors. While Gabriel has been with us only a short period of time he has been through a lot and his journey is far from over as he continues his recovery.
Thursday February 7th - 32 week Sonogram shows the baby has Right-sided CDH. http://www.babysurg.org/cdh.html His liver, gallbladder and bowels are in his right chest cavity. His heart and left lung are "pushed" to the left. MRI and Sonograms do not show a right lung. We are transfered to Columbia Presbyterian Hospital.
Sunday March 2nd, 2008 8:25pm - Born at Columbia Presbyterian Hospital Weight: 5lbs 10ooz. (2.554kg) Length: 19in (48cm)
Monday March 3rd - Placed on Extra-Corporeal Membrane Oxygenation (ECMO)
Thursday March 6th - Surgery to Repair "hole" in his Diaphragm was successful. During Surgery they discover that he has a full lung on the left and half a lung on the right. (For babies with CDH this is important since every little bit of lung helps. It is not the Size of the lung that is important...its is how well it Functions.)
Friday March 7th - He is supposed to remain on ECMO for 3-5 days to help him recover from Surgery however his blood begins to clot. This will jam the machine and he either needs to be taken off ECMO or his entire blood supply needs to be flushed and transfused. Keeping him on ECMO will set him back another couple of days and due to the blood thinners they need to use to keep the blood from clotting he runs the risk of bleeding. So we take the chance and opt for him to be pulled off ECMO.
Saturday March 8th -9th. - Gabriel is breathing using the ventilator and his Oxygen Saturation numbers are holding steady . They keep lowering the levels until he is breathing at room level and with minimum support.
Tuesday March 11 - Gabriel gets comes off the ventilator and gets extubated. He is now breathing on his own. He is receiving oxygen from the nose (C-Pap) but that is set to lowest level (21% - room> air.) He is not feeding yet, he receives his nutrients through an IV.
Friday March 14 - They start feeding Gabriel with Pedyalite through a nose tube to his stomach at 9:00am. By 9:00pm he is receiving 1cc (30cc => 1ounce) per hour on continuous feeding through his nose tube.
Saturday March 15- 17- They increase his feeding 1cc every 12hours and no signs of digestive problems. He is eating like a champ and they keep increasing his feedings
Tuesday March 18 - They remove his C-Pap for an hour and his numbers hold steady.
Wednesday March 19 - They removed his C-Pap for six hours and his numbers remained steady. So they decided to keep him off the C-Pap until his numbers come down.
Thursday March 20 - His Oxygen Saturation numbers remained consistant throughout the night so they are keeping him off C-Pap. They also removed his Pic-line and he now receives all his food through the nose tube. The give him constant feeds about 1 ounce in 2hours.
We would like to thank everyone for their support, thoughts and prayers during this very difficult time.
With Love Dino, Katina, Demetra and Gabriel Athan Kostaridis