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Entry from: 4/10/2010
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hi. my name is jillian. i am twenty years old. i have been with my fiance since i as fifteen. on september 4th i found out we were going to have a baby. they gave me a due date of may 10, 2010. i was way excited. on december 14th i had my ultrasound and found out we were having a boy. my fiance was ecstatic and i couldnt have been any happier. about ten minutes after leaving i got a call from a nurse saying my doctor wanted to talk to me. i was then informed that my son had a buildup of fluid on his brain and that i would need to see a specialist. on the 17th we went to the specialist and they confirmed that there was a good amount of fluid in the ventricles. the doctor was 90 percent positive that he had downs syndrome or trisomy 13. they performed an amniocyntesis and a week later the result came back as normal. the kept asking me if i anted to terminate the pregnancy. i said absolutely not. so then came the many trips to portland oregon to see the perinatologists at ohsu. they also agreed that he has a severe case of hydrocephalus. his ventricles are measuring at 75 mm on the right and 38 on the left. this is all due to a cyst that is blocking the fluid from draing. other than this they have found no other anomolies. my c section is set for april 26th and his brain surgery as scheduled for the next day. i know he was put here for a reason and all i can do is keep faith that miracles happen everyday.
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Entry from: 5/1/2010
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baby robert was born april 22nd 2010 at 2:55 am. he weighed 11 lbs and 5.2 ounces and he was 21 inches long. needless to say he was born by way of c section and it was two hours before i got to see him. as soon as i seen him he was sucking on a pacifer and was soo cute. they then took him to get an mri. they have found no other problems. his head measured at 52 cm. he was taken to get his shunt put in at one that afternoon and by five he was in the nicu. his head gradually started to decrease and by one week his head was down to 49 cm. on april 30 at about 2:30 in the morning i called to check on him and was told his incision was leaking quite a bit of brain fluid and they would let the doctors know. he had lost a quite a bit of fluid so about 2 that afternoon he went in for a shunt revision. they gave him an adjustable valve and turned it up as high as it could go so it wouldnt drain as fast. they also gave him nylon stiches to make sure the inciion didnt open up again. he is now nine days old and his head is measuring 45 cm. we should be able to go home soon and i cant wait. i know the road ahead of us will be long and bumpy but it will be well worth it. he is my miracle child and i wouldnt change him for the world.
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Entry from: 5/10/2010
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so baby robert is now nineteen days old!!! he isdoing amazing. we got to take him home from the nicu at two weeks and two days. he is having trouble nippling all his feeds so i have to feed him through a ng tube. but every day he is making progress in the amount he eats! today i got him to drink 27 ccs. thats the most hes ever nippled!! go bubba. yesterday was mothers day and i cant thank god enough for blessing me with such an adorable and lovin baby. so far hes beating the odds!!!
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Entry from: 5/19/2010
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so robert will be one month old on the 22nd!! he just got his stiches out yesterday and got to have his first "real" bath today! he smells delicious! we got him to eat 50 ml from the bottle. his total amount he eats is 80 ml every three hours. heis a wonderful little blessing and i cant wait to share the rest of our story with everyone.
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Entry from: 6/23/2010
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so since my last entry we have hit some bumps in the road.. a couple weeks ago i tarted noticing roberts head seemed to be feeling fuller. i wasnt sure if it was a significant difference but i could tell something was up. he had a doctors appt and his head measured 50 cm when it was 49. they didnt seem concerned. well on wednesday i really saw a big difference so i called his ped. and brought him in. his head then measures 53cm. needless to say we had to bring him up to portland. we brought him in the er and we were brought back right away. he was given an mri and they tried turning his shunt down to see if maybe it was draining to slow. once the mri came back it became apparent that his cathedar had slipped and his shunt wasnt draining at all. mean while his head measured 55 and in the morning 57...and he hadnt eaten in about 16 hours. these two make for a grumpy baby.they rushed him in for a shunt revision. forty five minues later i was told everything went smoothly. he got his own room on the pediactrics. by saturay we were able to go home. the next day was my fiances first fathers day
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Entry from: 6/23/2010
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so everything was going good and then he started running a temp. when i went to his doctors it was 102.6. so off to portland we go. once we got there the biggest concern was possible infection. so he went for an xray. they drew blood and gave him a cathedar to test his urine. next came the mri and they took a sample of csf from his shunt. so his blood count was really low but his mri showed no change. his shunt site looked really good. it took about two hours for the results from the csf to come back once they did i was told that his white blood cell count was 240 when it should be 50 or less. so they started him on vancomyacin and he was put into the schedule to have his shunt removed due to bacteria they saw in the csf. so yesterday at 11 they removed his wonderfully working shunt and placed an evd.(a shunt that goes on the outside)he has to be infection fee for ten days before they can place his new shunt which will make five brain surgeries in two months of life. now we just have to sit and wait and hope this is it for a while.
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Entry from: 6/24/2010
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so at seven robert had an mri tonight to see if his ventricles have went down and he also had his csf tested for whit blood cell count. his level of white blood cells went from 261 to 487. so hopfully the two antibiotics he is on will start knockg that number down. it needs to b at zero for ten days before they put in his new shunt. also i was just told the findings of his mri and the said there seemed to b an improvement in the size of the ventricles and betterr visual on different parts of the brain. so at least there is some good news. now we just need the antibiotis to start kicking butt..ill write more when i know more
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Entry from: 6/24/2010
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so i just talked to one of the doctors that works with the infectious disease unit and she said he has the kind of staff that lives on the skin and vancomyacin should help but they upped the dose since his lvls of white blood cells had went up last night but are back own in the two hundresds o at least they are going down now. he just got his picc line today and i am soo glad they can stop poking him all the time now. he gets so mad when any doctor or nurse comes near him. so looks like we are spending 4th of july in the hospital luckily there is a good view of the city from doernbecher
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Entry from: 7/4/2010
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okay so robert had his vp shunt placed on july 2nd and they kept him 48 hours to continue antiobiotics. everything went pretty good. they decided to change sides and it is now on the left side. they are trying to minimize the chance of infection so they also made a new abdominal incision. his head already looks extremely different. they set the pressure to 1.0. first time it was 2.5 then last shunt was 1.5 now 1.0 so hopefully its the right setting. dr. seldon didnt seem concerned he said that he had a really bad case of hydro and there was a lot of fluid to be drained. we have a follow up appointment in two weeks also with cranial facial and the eye clinic. hopefully its his last hospital stay for a long while. i cant wait to get home to my own bed with no wires on my son and no nurses waking him up RIGHT after he falls asleep..grrr plus its 4th of july. awesome!! well we are in a five hour taxi ride so ill keep everyone updated. oh yea and i just want to say how proud i am of all these babies dealing with hydrocephalus. i couldnt be more blessed
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Entry from: 8/21/2010
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well robert will be four months old in two days!! we have been home from the hospital and doing awesome since july fourth. robert has started physical and occupational therapy and they are both very nice and helpful. his first ot/pt at our house they brought him a chair that can be a stroller or a chair for the house. it helps him sit up but he only liks that for so long. he weighs 15 lbs and is smiling and laughing(daddy got to see this twice already...)we are trying to get over a bug we have had but other than that doing great. coming up in september we have an appt with craniofacial to see about helmeting...and in october we have genetics testing and mri nueorsurgery follow up...robert loves to be held and hold hands. hes a mommas boy but he is allowed to be spoiled. i am sooo grateful for roberts good health and continue to pray for my handsome little baby
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