4/30
My baby is doing so good today! right when me and aaorn got here he just had the biggest gummiest smile when he heard us come in! it was seriously the cutest thing ever! They changed his bed today, I am sure you have seen the bed he has been in from the pictures but now they put him in a crib sort of thing. He does not need the light to keep him warm he can just use the blanets now:) this means he can wear clothes too! He is wearing clothes that the NICU has for him and can i just say they are hideous! I cant wait to get him home and dress him cute! he has to keep one arm out of his shirt because of his PICC line so the doctors can have access to it as much as possible.
He still has not opened his eyes, but he is trying so hard! We saw a tiny sliver of them today but still not a full eye opening! He is sucking on his binki really good, when he wants to, which means hopefully he will be as good at nursing as he was before he got in here! He just needs to wake up so IIIIIII can feed him!
His second spinal tap came back, and what they found was it still had a bunch of white blood cells in the fluid, which means our little Rj gets to stay in here 21 days! We just keep telling ourselves we would rather have him in here getting better than having a poor sick baby at home.
Well friends this is all the update I have for today! Youll hear from me soon:)
With all our love, Tiff, aaron, Sage, and RJ
Saturday, April 30, 2011
Friday, April 29, 2011
4/29 update
Here is an email tiff sent me earlier today:
4/29Rj is doing about the same, we had the speech pathologist come in yesterday to check out his mouth functions, he said his tongue is symetrical which shows both sides of his brain are functioning correctly from his stroke. His sucking reflex is there now all RJ needs to do is wake up so he can nurse! the doc said the best thing for him is to nurse because if forces him to multitask, which he does not need to do if he is bottle fed.
RJ was put is put on a schedule now. he eats from his feeding tube every 3 hours. they call them cares and on those 3 hour marks me and aaron are able to change his diaper, take his temp, swab his poor dry mouth, brush his hair, all that fun stuff that we are SO glad they let us help out with! get to still be involved in taking care of him! soon well be starting a bath schedule.
this morning when we got here an ultrasound tech came, there has been discoloration in his right leg ever since he was born, when he was having his seizures there was a marble look in his skin that turned red and white, anyways, they wanted to see if there were any clots or anything in that leg. it came back completely normal thankfully! so that is just a skin thing that well just have to keep an eye on. his feedings keep gradually getting bigger, they did not want to overwhelm him at first, but he is eating 76ml every 3 hours. he is gaining tons of weight:)
we have been snap happy today! ill get those pics to you asap! thank you everybody for all your support and prayers, it means the world to me and aaron and we definately feel the effect of your prayers.
Thursday, April 28, 2011
Thursday the 28th
Here is the little angel. Tiff says he is doing good today. The nurses in the NICU are starting to get him on a schedule where he eats at 6,9,12 and 3 (I think). This means tiff can go in there at these times and nurse him. This will happen once he is alert enough once the meds wear off. He now weighs 10 pounds 7.5 ounces. Isn't he just the cutest thing in the world? We love you RJ!!!
Wednesday, April 27, 2011
A message from Tiff
First of all i want to thank everybody for all their thoughts and prayers. we feel the effect of all of that and we are glad to have such supportive ffriends and family! i just kinda wanted to tell our sweet babys story from the begining and give a little more of the medical side of it:) stephy has already done an amazing job at telling the story and thanks to her for putting this together!
Rj was born friday the 22nd at 12:31!! since sagie was so big we wanted to play it safe and do a c section. when she was pulling him out he still got stuck and the incision still ripped, she said it was a very very good thing we did it this way. rj was a beautiful healthy baby boy until monday at 1 in the morning. he was in the nursery and the nurses noticed something was definately not right, he stopped then again at 3 he did the same thing, he was having seizures. they rushed him to the NICU automatically then called me and aaron. aaron ws the one that answered the phone and i just knew that by the look on his face it was not good. we went down there and they were automatically hooking him up to anti seizure medicine which should have taken effect immediately, but it took about ten minutes which is not normal, poor little guy was just exhausted. at this point is when me and aaorn lost it. it is the hardest thin in the world to not be able to hslp your baby and see them there like that. once he calmed down he immediately got a blessing. me and aaron were there all night with him then
*in the morning he went to get his cat scan. it thankfully came back clear.
*then they did a LP to get his spinal fluid and they found bacterial meningitis. this could be fatal to newborns.
* then he was scheduled to get a mri a few hours later and they found he had a stroke in the area of the brain that controls his motor functions.
* the doctors sent his case to primary childrens and they have been in touch with them the whole time.
after he got all these tests done there was nothing we could do but wait wait wait! that is what killed us is not having any answers. with our baby boy having srizures and there is nothing anybody can do about it was just killing us.
we both lived in the NICU until i was finally released yesterday. now is when the fun part begins. RJ will be in the hospital for a minimum 2 weeks, so the hardest part is going to be splitting time with our two babies. being there for sage, and also going to be by rjs side. i will try my hardest to keep you updated and be in contact with stephy and she will add stuff as well. again thanks for all your love prayers support and help!
love tiff, aaron, sage, and rj
4/27
today rj is getting his central line put in. his poor veins keep colapsing and so they had to go with this option, but in the long run it is better for him. the iv goes straight to his heart, and it is very effective. it has been a very lengthy procedure about 3 hours just so they do everything right.
he is getting another LP to get more spinal fluid to see if they are getting rid of the meningitis, which they finally found is waht is causing the seizures, so hopefully if they are doing it right his seizures will stop!
it is a little easier because were starting to get answers, but there is stiill so much they dont know. like steph said he got an eeg done, and that showed abnormal activity which they believe is from the meningitis. like steph also said he is able to have mild through a feeding tube now so he does not hav eto be just on the iv.
we have gotten him to smile a bit but he has been asleep and sedated every since he got down to the nicu. all these pics you ahve seen withi his eyes open are from before he was in there. his anti seizure medication makes him tired so he may just sleep til he comes home! again thatnk you for everything everybody!
love tiff, aaorn, sage, and rj
Rj was born friday the 22nd at 12:31!! since sagie was so big we wanted to play it safe and do a c section. when she was pulling him out he still got stuck and the incision still ripped, she said it was a very very good thing we did it this way. rj was a beautiful healthy baby boy until monday at 1 in the morning. he was in the nursery and the nurses noticed something was definately not right, he stopped then again at 3 he did the same thing, he was having seizures. they rushed him to the NICU automatically then called me and aaron. aaron ws the one that answered the phone and i just knew that by the look on his face it was not good. we went down there and they were automatically hooking him up to anti seizure medicine which should have taken effect immediately, but it took about ten minutes which is not normal, poor little guy was just exhausted. at this point is when me and aaorn lost it. it is the hardest thin in the world to not be able to hslp your baby and see them there like that. once he calmed down he immediately got a blessing. me and aaron were there all night with him then
*in the morning he went to get his cat scan. it thankfully came back clear.
*then they did a LP to get his spinal fluid and they found bacterial meningitis. this could be fatal to newborns.
* then he was scheduled to get a mri a few hours later and they found he had a stroke in the area of the brain that controls his motor functions.
* the doctors sent his case to primary childrens and they have been in touch with them the whole time.
after he got all these tests done there was nothing we could do but wait wait wait! that is what killed us is not having any answers. with our baby boy having srizures and there is nothing anybody can do about it was just killing us.
we both lived in the NICU until i was finally released yesterday. now is when the fun part begins. RJ will be in the hospital for a minimum 2 weeks, so the hardest part is going to be splitting time with our two babies. being there for sage, and also going to be by rjs side. i will try my hardest to keep you updated and be in contact with stephy and she will add stuff as well. again thanks for all your love prayers support and help!
love tiff, aaron, sage, and rj
4/27
today rj is getting his central line put in. his poor veins keep colapsing and so they had to go with this option, but in the long run it is better for him. the iv goes straight to his heart, and it is very effective. it has been a very lengthy procedure about 3 hours just so they do everything right.
he is getting another LP to get more spinal fluid to see if they are getting rid of the meningitis, which they finally found is waht is causing the seizures, so hopefully if they are doing it right his seizures will stop!
it is a little easier because were starting to get answers, but there is stiill so much they dont know. like steph said he got an eeg done, and that showed abnormal activity which they believe is from the meningitis. like steph also said he is able to have mild through a feeding tube now so he does not hav eto be just on the iv.
we have gotten him to smile a bit but he has been asleep and sedated every since he got down to the nicu. all these pics you ahve seen withi his eyes open are from before he was in there. his anti seizure medication makes him tired so he may just sleep til he comes home! again thatnk you for everything everybody!
love tiff, aaorn, sage, and rj
Wednesday April 27th update
Tiff was discharged yesterday. They had to leave Rj behind which was so hard im sure. He is in the NICU getting antobiotics. This morning they are putting a central line in because his veins keep collapsing. This way they will not have to keep poking him. They will keep this line in the rest of the time he is at the hospital. At this point they think the seizures are coming from the meningitis. He is on anti seizure medicine. They are hoping that once the meningitis is under control the seizures will stop. We hope this is sooner rather then later.
Tiff has been pumping breast milk so rj can still get breast milk through a feeding tube. He is very tired all the time from all of the medicine that they have been giving him to keep him sedated. However, tiff was saying that hopefully in a couple of days he wont have to be on the sedation medicine so she can go in every couple of hours and breast feed him. That will be so good for her and RJ when that happens.
The good news is that he is still gaining weight. He is such an adorable little chunker. He is being such a little trooper in the NICU. Tiff and aaron have to rotate going in there whenever they can to see him. And sage can't go back there so someone always has to be with her.
This is the update for now! ill post again when there is more information. Love ya thygersons!
EEG test
This is little RJ getting his brain function tested. He had to lay there and be still for about an hour. He had some drugs to help him sleep.
Tuesday, April 26, 2011
Sweet little RJ
Precious little RJ was born on Friday April 22nd. Tiff and aaron decided to get rj here by having a C-section so he could for sure get here safely. He weighed 10 lbs 6 oz (I think.... haha) Everything went well. Im sure aaron enjoyed watching the c-section haha. As you can see he is ABSOLUTELY adorable and too cute. And.. he looks like sage.. he got daddy's genes! When he was one day old Tiff and Aaron were holding him they noticed some strange things RJ was doing like twitching in weird ways. They didn't think anything of it. That night the nursery informed them that he had a seizure and was being rushed to the NICU. Ever since then he has been having seizures here and there. They also did a spinal tab and discovered that he has bacterial meningitis. This is a scary thing for an infant to have. They immediately started him on antibiotics. He has also had a MRI and a cat scan to see if they can figure out why he is having his seizures. They did tests this morning to determine his brain function. We should be finding out the results of all of these tests in a couple of days.
The reason I am putting this blog together is because RJ will have a long recovery process. Tiff and Aaron appreciate all of the love and support they have been getting, and would like family and friends to have another source of information to come tol. This way you can read his story and keep yourselves updated if you wish, without having to try and get a hold of them all the time. They have a lot on their minds so this will hopefully take some of the stress off of them. I will try my best to keep this updated. Please keep Rj, Tiff, Aaron and sage in your prayers. They sure can use them at this hard time. We love and appreciate your support.
Tiff will be sending me details on his progress and his detailed diagnosis. I will post this info as soon as I get it!
The reason I am putting this blog together is because RJ will have a long recovery process. Tiff and Aaron appreciate all of the love and support they have been getting, and would like family and friends to have another source of information to come tol. This way you can read his story and keep yourselves updated if you wish, without having to try and get a hold of them all the time. They have a lot on their minds so this will hopefully take some of the stress off of them. I will try my best to keep this updated. Please keep Rj, Tiff, Aaron and sage in your prayers. They sure can use them at this hard time. We love and appreciate your support.
Tiff will be sending me details on his progress and his detailed diagnosis. I will post this info as soon as I get it!
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