| Eric Nathaniel DuBow |
| Eric is my third child,he was born by repeat section at 37 weeks after 4 weeks premature labor.We knew from the time he was born he was in for a bumpy ride,we just didn't know how bumpy it would get though. |
| July 30,1999 at 12:36pm |
| 5 pounds 9 ounces |
| 18 inches |
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| Eric's long journey would start soon after bith as it was noted at birth he had a possible hydrocele,he did have a 2 vessel cord vs. a 3 vessel cord in which he had a ultrasound of his kidneys done within hours of his bith and which was normal.He was also born with a droppy eyelid(Ptosis) and an asymetrical head and face.Those these things were noted at birth nothing more was said about it to us.Eric went home as normal on the 3rd day. Eric went for his 2 week checkup with his new pedy and during the exam the pedy first noted his head and face and said we would keep an eye on it and if it wasn't any better at his 2 mo. checkup we would run test to find out what was going on.But he did discover while listening to his heart a very loud murmur and said he was sending us right down to CHOP(Childrens Hospital Of Philadelphia) to see a cardiologist and stepped out to call him personally.At CHOP we meet with Dr. Donner and he listened to his heart and did an EKG and took us over to have a Echo done right away.The results of the Echo showed that our sweet little guy had a VSD(ventricular septal defect) which is a hole in the lower chambers of the heart.By this time we were freaking out,how could this happen and what would happen to out little guy next?The doctor told us his hole was small and it should close on its own by the time he turned one,but he did tell us things to look out for and told us if he was to have any surgeries or major dental work he would need to have antibiotics beforehand to prevent a deadly infection of the heart.Even writing this some two years later it still breaks my heart to think of my little guy having to go through all of this stuff. Well at his two mo. checkup with his pedy his head had not changed at least not for the better and once again we were off to CHOP this time to have an X-Ray of his skull to see if he had CRANIOSYNOSTOSIS(premature fusion of the skull bones),this big word scared me as I have never heard of it and to be honest I have never thought twice about a baby's skull and that anything could ever happen to itHe had his X-Ray done on the 8th of Oct. and on the 18th we were told that Eric did indeed have SAGITTAL CRANIOSYNOSTOSIS and we would need to see a NSG(neurosurgeon) and he would have to have surgery to fix it.We were refered to Dr. Peter Sun at CHOP and after meeeting with him we set a surgery date of Nov. 5th 1999.My poor baby was just turning 3 mo. old and he had already been dx with a heart defect,a hernia which would be repaired on Nov. 17th 1999 and now we are told that he has this and will have his skull cut into to correct this birth defect.By this point I was losing my mind and felt like I was the worse mother in the world as I believed I was the blame for all that my poor son was having to go throughI kept trying to figure out what I had done to cause this to happen to my son but as I would learn in the months to come that it was nothing that I did or was there anything short of not having him,which I would never have done if I had known ahead of time as he is a true gift from God,to prevent this.Eric had his cranio surgery on the 5th and he did really well though I didn't bounce back as well as he did,even today just thinking of the surgery brings tears to my eyes,tears of pain knowing that my 3 mo. old son had major cranial surgery and also tears of joy that there is a way to fix what was wrong and that he did so well.Eric is definitely a trooper. |
| Eric we thought was out of the woods and now could go on to be a normal child,but, this was not the case.Two weeks after his sagittal surgery he had hernia repair surgery and again all went well and Eric recovered very well.On Nov. 27th 1999 just 25 days after his cranio surgery and 10 days after his hernia surgery Eric was admitted to the hospital with RSV,my baby was battling for every breath he took and I had nightmares while in the hospital with him if I fell asleep he would stop breathing and the nurses wouldn't hear the alarms and he would die so needless to say I didn't get much sleep from Nov. 27th until he left Dec.2nd.Looking back on it now almost 2 years later I think I worried too much over that as Eric has such strength and nothing holds him down for long.He came home from the hospital with a nebulizer and he still uses it to this day but now it is mostly used only during the late fall and through the winter months when he seems to wheeze the most.After all the excitement of Nov. things seemed to calm down for awhile,though we still battled his constipation problem.Around Feb.2000 we noticed Eric's head was looking kinda funny again and we were back to the NSG,he felt around the head and also noticed Eric was starting to show signs of developmental delays.His head felt good and the sutures felt opened so we decided to try a molding helmet to help reshape his head and with all he has been through they feel the delays are normal as he really hasn't had a lot of time to develop his skills as other children so for now we will just keep an eye on him.He wore his helmet from March 2000 until the end of June 2000 and though it did help round out the back of his head more the left side in the front continued to recess so we were sent for another CT and referred to a plastic surgeon,on July 18th Eric had his CT and on Aug. 2nd we found out that we had been bitten by the Craniosynostosis again.This time it was his left coronal suture that had fused and we would be looking at another surgery and possiblly two.My heart sank as we heard that we would once again be putting Eric through surgery,his third and he wasn't even one years old yet,UGH!!!We set the date for Nov.6th 2000.This one would be one year and one day after his first and also happened to fall on his big brother's 3rd B-Day.In the Interium we had set a date for his Ptosis(droppy eyelid) repair for Sept. and we had to postpone that as the eye surgeon wanted to wait to see if the cranio surgery had any effect on his eyelid.Eric was also evaluated by Early Intervention in July and would start OT and have a SI(special instuctor) come out to our house to work on his developmental delays.July 30th 2000,my sweet son Eric has made it through his first year and though it hasn't been the most normal of first years he has done it and done it well,YEAH ERIC!!!!! Between July and Nov. we kept pretty busy with GI appointments,OT,SI,regular well baby visits,genetics that we didn't dwell on it too much but at this time I did decided to learn about the internet and I'm glad I did as I found some wonderful support groups out there that dealt with Eric's cranio problems,heart problem,constipation problem.I was never soo glad to find that I was not the only one in this world that dealing with these issues and at this time I have two cranio groups,one heart group and one special needs group that I belong to and if it wasn't for them being there I swear I would have lost it a long time ago.I threw myself into researching all I could on all of his problems and trying to see if I could find the common thread that the Drs were having a hard time finding.Well finally Nov.came and my Eric was once again having cranio surgery and I won't go into everything as if you want to read about it I'll be adding the link to his cranio page so please go and read it if you want,but you might want to bring some tissues as even today when I read it I tend to tear up.But to let you that don't read it he did do good and though they did give him more blood this time as he did have more blood loss this time he was back to his sweet self,though swollen by the 3rd day post-op.This kid totally amazes me how well he does with all this crap.We were told that he will need another surgery in the future though but only time will tell when it will be.Again after he was home things calmed down and we awaited his Ptosis repair surgery which was now set for Feb.15th 2001.Eric had his Ptosis repair done in Feb and all went well and he also had a follow up echo of his heart done and his PC(ped. cardio) said his hole hasn't closed but he is doing well and if it never closes he doesn't see it effecting his life any. In Aug. we seen his plastic surgeon and he noticed his eyelid was falling so he might need to have another eye surgery we will find out more in Dec. when we see the Eye surgeon again but cranio wise the plastic surgeon said he is doing well and he doesn't see Eric needing his next and hopefully last cranio surgery until he is around 10 years old and the best news is we don't have to see him again until July 2002,WOOHOO!!!!!!Eric is doing well these days though he still is a little behind developmentally and has some speech delays and the constant battle with his bowels he started preschool in Sept 2001 and he loves it and his teachers and staff there are great to him and his brother who is in his 2nd year there.and the staff knows all about his conditions and they say if they didn't know about it they would never suspect he had anything was wrong with him,you just don't know how happy that makes me as I feared he would stick out like a sore thumb.Well that is it for now but do check back as I will be updating as things pop up. |
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| Well Eric did need a 2nd Ptosis surgery for his left eye.That was done at CHOP on March 26th 2002.Eric also had some major oral surgery done,having almost every one of his baby teeth capped because of Enamel Hypoplasia.But all in all Eric has been doing great cranio and heart wise. We went to see Eric's cardio doctor the first week of Febuary after not seeing him for 18 months.He took a listen and sid the hole was still ther BUT did no echo or even a EKG to make sure nothing had changed.I was not too comfortable with that so I called the pedy and requested to see another cardio for a 2nd opinion.On Febuary 14th 2003 which just happens to be CHD Awareness day :) we met with what was to be only a 2nd opinion but as it turned out we decided to change cardio doctors that day as her and Eric hit it off well.This was the first time since Eric's birth he layed calmly on the table and let them do an echo of his heart without sedation.His VSD was still there and still 5mm in size but at this time it didn't need to be closed as he was feeling no ill effects from it.We are set for a follow-up in Febuary of 2004.Eric is loving pre-school and is very smart and such the charmer(so his teachers say).I even decided to go back to work this year because Eric's health has improved so well.Our doctor visits are down to seeing his cardio and plastic surgeon only once a year and his GI for his costipation issues and pulmo are only every 3-4 months. 2004:The Year I never wanted to come.... The New Year came in okay,Eric is doing very well in his 3rd year of pre-school and will graduate in June and then start kindy in Sept.Well we went for our yearly cardio check-up in Febuary and that is when that shoe that I never wanted to drop was dropped right on my head :( Yeah,I think that in the back of my mind I knew before going in for that echo i knew what she was going to say as Eric has been tired a lot for the last few months.By the time he gets home from school he is ready for a nice LONGGGG nap.And the fact that Eric hasn't grown or gained any weight in over two years,I knew,I guess I was hoping that i was wrong.But I wasn't,his VSD was comprmising his body and it was now time to get in there and close it. I know that many people looked at me as I must have been some cold hearted B,as I knida talked so matter of factly about it at the time and still do but after already having to hand over my precious little man 5 other times to be operated on and the fact that Eric was so xecited to finally get his broken heart fixed how could I show him or the rest of the world that I was scared out of my mind for my youngest child.Eric's open heart surgery was set for June 9th 2004,with a heart cath to be done the day before. On June 8th at 4am Eric and I,as my husband Brian had to stay home with the other two children as they were still in school,set off for A.I. DuPont in Wilmington,DE.We arrived got settled into our room on the cardiac unit and Eric had a special gift waiting for him from good heart friends from across the country.Eric was in good spirits and was prepped for his cath.After the cath,the surgeon came out and said the hole was a bit bigger than the echo had showed but no other problems were found.The surgery was a go for the 9th.They brought Eric back to his room and we chilled watching TV and once he was allowed to get up we walked the halls and even went outside so i could use my cell to call some people and update them on how everything was going. The morning of the 9th was here and Eric was so excited,he was telling anyone who came near that today they were fixing his broken heart.Me I was trying to convince myself that this was really no biggie.Heck this was the 6th time Eric would be in an OR,he has always done great and I was sure he would this time too,right???? Well,the surgery was a big success.He was taken to the CICU from the OR.He spent about 23 hours there and then came back to his room.Within a half an hour of being back in his own room he was eating his favorite lunch of hot dogs and fries.And after lunch he wanted to get up and walk around,YIPEEEE!!!!! We only had one problem while at the hospital and that was the fact Eric did not want to pee after they took out the catherter :( That boy was holding on to that pee as if it was gold.It finally came down to that they were about to straight cath him and he didn't want that so he let loose,haha.When we had set the day for surgery they had told us to be prepared to stay in the hospital for 7-10 days,well in pure Eric style,we were only there for 72 hours post-op.THAT'S MY BOY!!!!! Now that all the major stuff has been taking care of there was one more thing to deal with before Eric was to start Kindy in Sept. and that was potty training.Eric was trained about 3 weeks after his heart surgery and just in time for his 5th birthday on July 30th.In the 3 months since his surgery Eric put on 5 lbs and grew about 4 inches,YEAH!!!!! and all is right in the world of Eric again. He started kindy in Sept. 2004,we got rid of the GI doctor and the pulmo doctor as he hasn't had no pulmo issues since the heart was fixed.So we are now down to cardio,plasic surgeon,genetics,eye doctor,dentist and pedy.Man I never thought we would have such a short list of doctors. 2006 update: Eric is in the 1st grade and doing great. |
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| Eric 4/06 1.5yrs post-op from OHS |