He is home!

Ok.. so our computer crashed the day we brought RJ home! of course huh!! so were sorry we havent updated you in so long! My amazing hubby just fixed it so ill finally let you all know how RJ is doing! Hes doing AMAZING!!! he is seriously such a good baby! only cries when he is hungry... thats it! totally oposite from my sweetie sage:) He just has such a sweet spirit about him and we cant get enough of him! He is drinking about 6-7 oz each feeding! He is weighing 12 6 according to his dr appointment from the 16th so he is probably weighing more now! in size 2 diapers and 3-6 month clothes! haha we love em chunky!
As far as his appointments go we have tons of follow up appointments for the next few months. its going to be very busy and ill have to be on top of things! He was sent home on his seizure medicatoins which he will have to be on until neurology decides he is done with it, so who knows how long. but other than that life is going back to normal! he is such a smiler! Some people may say it is gas but i don believe it! he is a happy baby and happy to be home! His burps are seriously grown man burps! they are sooo loud! and his farts haha im glad he gets those bubbles out so easily!
anyways we just again want to thank EVERYBODY for all their thoughts and prayers! once you see RJ you can just see how strong he is becasue of all of your fasting, prayers, thoughts, everything! we cant thank you enough we love all of you so much!
Love Tiff, Aaron, Sage, RJ

Im sure all of you have a facebook account? Mom posted a ton of pictures on her page or RJ coming home. I cant get them to load for some reason.. so check them out there and ill keep trying :-)

Steph

Out in the real world!

Here is rj on his first big shopping trip. Mommy is buying him size 2 diapers now haha. Tiffs computer is broken so she wanted me to let all of you know that rj is home now and doing GREAT! They brought him home yesterday and sage is just starting to realize that she has a new little brother. What a fun time. Im sure tiff will write an email when her computer gets up and working again.

Home!!!

Little RJ gets to come home tomorrow! If all goes well with his last spinal tap. But were all very optimistic. He has been such a brave baby! I personally cant wait to meet him.. ill be there in 2 weeks! Im sure tiff will be writing an update soon! Thanks for all your love and support. Im sure tiff and aaron really appreciate it.

big time update

5/11

Wow so much has happened since I last update you! sorry i havent written sooner but as you can imagine, life is crazy:) RJ was moved to pod A!!!! this means its the healthy baby pod and he is coming home soon! yay RJ! They have him in his own room which im so excitetd for! he has been sharing with a ton if different babies for the past week and a half! They broght him a fun light up bouncer! he is obsessed with it he stares at the lights and its a whole new adventure for him!
As some of you may know, RJ was born with a literally purple leg, which the doctors diagnosed as a bruise right off, Aaron and i knew it was not a bruise so we have kinda been keeping a close eye in it! it has been spredding up the right side of his body, sort of a modeling, not as purple as birth, but a distinct different coloration from the left side of his body. at first they thought it has something to do with his stroke, since the stroke was on the right side, it may have affected his left. They did an ultrasound on his hips and it came back completely clear of clots or anything like that, so the doctors left it at that. On sunday, Aaron noticed the modeling was on his face, just completely spredding! So we called the n.p.in his room and pretty much demanded that they take a closer look at it! We could just sense there was something more! So went and did some research and found an article of something it MAY be, Cutis Marmorata Telangiectatica Congenita (CMTC) feel free to look it up on google, it comes up but kinda complicated, but there are only 200 reported cases of this! what are the odds that he would get THIS too!?? The dermatologist came in the next day to take a look, and they definately confirmed that this is what he has! what is the luck that our little buddy got this along with everything else!! so they automatically took a bunch more blood tests to rule out a bunch of things that come along with this. The optamologist came in today to eliminate glaucoma, and yay it came back clear! they also ordered an ultrasound on his kidneys to see if there were any cists on them, they also came back clear! Were very hopeful that everything will be okay with him! He is a fighter! All of the things with this will be able to followed up on outpatient, so were hoping he will still be scheduled to come home on monday or tue!! we cant wait to get our buddy home! even thought the nurses in the nicu will miss him they all say they have a crush on him hahah i dont blame them! love you rj!
love tiff, aaron, sage and rj

More pics!

Just a couple days oldI think he kind of looks like tiff in this picture



Sage is getting so big... could she be any cuter??
Here are a bunch of pictures that krystal had on hand and was nice enough to send to me! Some are from when he was just a couple days old, clear up to a couple of days ago. Enjoy!

Mothers Day

Here is a cute little RJ flower that the nurses made for tiff. The flower peddles are his hands and the leaves are his feet. What a fun idea right?

Look at this chunk!

Here is a picture that tiffy sent me the other day. Look how adorable he is! He is weighing in at almost 12 pounds now. Lets hope he can go home next monday like planned!

5/8 update

5/8
So we got a call around 8 last night and the nurse told us that RJ's picc line clotted off! holy moly good thing they caught it since his picc line is attached to his heart! so they took that out immediately and our little guy is going to just be on plain iv's for the rest of his stay. When we got the call i headed over there for his feeding, and they were putting an iv in his poor little head! he was screaming so i just went and held his hand and tried not to cry!! he was so brave!! it took the nurses 3 pokes to get it in! Since he was screaming the nurse said just to feed him before giving him his seizure medicine cus he was mad (which they are doing by mouth now)so i did and he fell asleep!! after forever trying to wake him up she finally said we need to put a feeding tube down his throat cus he needed to get it in his system! so he just laid on my lap passed out while she put the feeding tube down! seriously after this experience my little guy will be able to go through anything! we loe him so much! it was a very interesting mothers day in the nicu! we love you all ill keep you posted!
love the thygersons!

Saturday update!

Today when i got to the hospital my little man was up all morning! I got there around noon the nurse was feeding him a bottle and she told me that he just finished eating the amount he would need for the whole day!!! AND she just put him in size 2 diapers!! holy moly our baby is growing so fast! There are no updates as of right now, he is just our precious angel doing so good trying to get better! love you all!
love the thygerson fam!

A precious picture from aunt sheri

After my bath

Here is a picture of our cute little boy after his sponge bath. As you can see he is in a crib now. yay. Im so glad to hear that he is improving so much!

Thursday update

5/5
Since it is late and im WAY tired im going to update you in bullet points:D
* Rj has been in the most critical Pod (pod D) which is for the most critical kids. but today he was moved to Pod B which means he is in the "getting better" rooms! Yay! once he moves to Pod A that will be the going home rooms! I was so happy he moved in there today!
* He is going home on his seizure medicine, which they have been giving him through an iV, but last night they changed it to an oral dose, which is DISGUSTING! but it was mixed with my milk so it was not too bad he did really good with not gagging on it! this is another step closer to bringing him home! Yes it is still a total of 21 days of him being in there so may 16th hopefully!
* He had a sponge bath today which he was not quite sure what to think about it! he got cold! well be posting the pics of that as soon as i get the pictures from the nurse, it was on the hospital camera. but he smells so clean!!
* They officially took out his feeding tube! Were hoping that they will not have to put another one in, but they go by every 24 hours, so that could change. but yay he looks so better without that in!
* He is weighing 11 something pounds and keeps gaining weight! My big boy:D

this is all i have for you today! love you all!
love tiff, aaorn, sage, and rj!

Wednesday May 4th update

5/4
Wow Our baby is a complete different baby than he was last week! He is opening his eyes, talking to us, just tons of personality! he is just looking and feeling better! To proove this, he pulled his feeding tube out!! He is trying to tell us i want mommy and mommy only! They were thinking that they were going to leave it out, but he still gets too tired at night becasue of his seizure medicine so they decided to put another one back in.
His umbilical chord fell off! i was putting his shirt on and off it came! this means he can not get baths so hopefully sometime next week hell get one! Along with pulling out his feeding tube he also hates his leads! they are what monitor his heart beat, oxygen, etc.. he pulls them off all the time! He is trying to tell us he is READY to come home!
Sage is hanging in there! Thank you everybody for all your help in watching her it means so much to us so we can go be at the hosptal with our buddy!
He was moved into a real crib today! He was moved from the heating bed, to the small plastic beds that they go in right when they are born, to this crib! he will be in this crib until he goes home! He has been sharing a room with 2 other babies cus they are deep cleaning all the rooms, so hopefully well get moved back to our room with a view soon!
So the nurse came in today and said that RJ is officially the biggest baby in the NICU! He is off their charts and just an adorable chunk! He is eating so so good and loves to take his bottle when he is awake and im not there.
Thank you for all of your prayers and thoughts and time and food! we seriously appreciate it more than we can explain! x0x0!
love tiff, aaron, sage, and RJ

Tuesday May 3rd

Here is a picture of our cute little Rj. Tiff was able to nurse him last night! He did such a good job. I just talked to tiff and she said that he just looks healthier. This makes me so happy! Im sure she will be sending me an email with an update soon. This is all I know.. haha.

Such handsome eyes

RJ opened his eyes today. He is sooo cute!

He opened his eyes!!

5/1

My little nephew opened his eyes last night!! That makes me so happy to hear, and im sure the thygersons are just thrilled! Im just glad to hear that he is starting to make some progress. I cant get the picture to work that tif sent me this morning so ill get that on here as soon as I can. RJ looks so cute in the picture (of course) so ill work on posting it. And here is an update from tiffy. Thanks for praying for my sis and her family.

RJ OPENED HIS EYES LAST NIGHT!! Of course Aaron was home watching Sage so I was snapping pictures like crazy to send to him! I walked in and started just talking to him, he had the biggest smile and opened his eyes and looked right at me! These past few days he would open them squinting once in awhile, but last night was completely open!!! So i took that opportunity to try and nurse him, and he totally nursed for a little bit! It seriously made my whole week! obviously:) Aaron went to the hospital this morning for his feeding and he started opening his eyes again so i think we are starting to see a wide awake baby now! its so hard with his medicine because it makes him drowsy but the doctors are going to start making it so his medicine is given to him so he is awake during the day and asleep at night, which will be nice:) He is just starting to LOOK healthier which is exactly what we have been wanting to see! Thank you for all your prayers, fasts, and thoughts. It is definitely rubbing off on him! We will update you soon! xoxo
love Tiff, Aaron, Sage, and RJ

4/30 update

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

4/29 update

Here is an email tiff sent me earlier today:

4/29
Rj 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 the 28th

Holding daddy's hand
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!!!

NICU

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

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.

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!