TJ update, baby mason too!

Well TJ is getting bigger, chubbier and more tempermental! lol. He's still saying dada, and signing mama. But recently he's decided he doesn't really like his teacher Wendy. He gets really fussy when she holds him to do therapies, and as soon as she begins to hand him to hubby or I he will shut right up and be happy. he tends to go from being very smily/happy to grumpy/mad in a heartbeat so we wonder if he's going to have his first tooth soon, it would explain some of the grumpiness!

TJ is attempting to crawl with help now, and is also better at sitting every day. he will hold your fingers and rock back and forth and side to side and just giggle and smile. His skin got REALLY bad for a little while there because we had a cold going through our home and him and I got it the worst. Whenever we get sick, or the weather changes our skin tends to get whacky so right as we were recovering from the colds, the weather cooled off so for a while there (just over a week) his skin would stay dry no matter what and within an hour after a bath would be all flaky again.

It's going to be such a blessing to be able to just give Mason a bath and be done with it, lol.


For those who want to look me up, send me a message @ myspace.com/martikadragoon my profile is private but you can still message me. I'm also on facebook.


Quick update on baby Mason: I had an ultrasound a couple weeks ago and Mason has completely caught up in growth, my fundal heighth increased 5 weeks within 2 weeks and at my ultrasound at 27w he already weighed in at an est. 2lb 5oz so nice and big!!! 4 days ahead in growth also. And the sibling rivalry is already getting crazy with mason kicking and thunking TJ anytime I hold him.

Updates on TJ and baby Mason

Well we took TJ into the Gastro doctor's office for the first time since he was out of the hospital today.
We got the "OFFICIAL" ok for his therapists to start feeding training with him which is WONDERFUL. it's the first major step in getting him off his Mickey button.
he's 13 months old and weighed in at 14lbs 11oz and 25 inches long! he broke the 2 foot barrier, lol.
The Gastrointerologist wants us to begin using a new formula with him, something from the pedialyte brand but hubby was the one who took him in since I had to see my OBGYN today.
He wants us to begin giving TJ juice not only to help with him eating new things, but also to help with constipation.

Tyler has recently learned the meaning of NO, lol. He doesn't say it but will slowly shake his head back and forth if he doesn't want something. It is so cute to watch. He's also begun to say DADADADA and BABABA which is GREAT! Yesterday morning he was laying on my bed and I asked him if he wanted to be held, he shook his head no and about 15 min later when I asked again he threw his arms up really fast. If I am cleared by doctors to go we will be attending our local Buddy walk for Down SYndrome. we also plan to take TJ trick or treating (just our neighboring houses really) and he will be dressed as a "ninja baby" with a very safe, breathable mask on his face (just a "skimask" style hat made with very thin, breathable fabric)

a few nights ago we FINALLY got to see TJ sit in a shopping cart, we had a couple blankets around him but he was able to hold himself upright for about 15-20 minutes with just a couple short spells of tiredness where he didn't want to hold his head up. he's getting alot better at sitting as well, and will now use his ab muscles to pull himself up some if we are holding him in a semi reclined position.
TJ has also begun to throw tantrums, TRUE tantrums. He kicks and thrashes like crazy but will stop when I hold his legs (so he can't kick) and FIRMLY tell him NO, STOP FUSSING! (I don't yell it, lol)
The other day we had a funny situation where TJ woke up fussy in the morning and so hubby held him while we got his feeding stuff together (pump/formula/etc) and as soon as he layed TJ back down he SCREAMED as though he was being hurt. He wasn't, it was a tantrum, so hubby left the room and I patted TJ a few times to calm him a little, then walked far enough from his crib to be out of his eyesight. He stopped screaming and crying almost immediately. When I came to our room again hubby said "What did you do to get him to stop?"

He didn't believe me when I told him, but I showed him again later. he knew that his daddy didn't have his little game figured out so he was playing it for all it was worth.



update on baby Mason: Unfortunately my fundal heighth is measuring about 20-22 weeks and I'm 26 weeks along. We have an ultrasound scheduled for 1 1/2 weeks from now to see how HE is growing. With TJ I had IUGR and I kind of expected it with this baby as well since with my mom, she had it with ALL of us children (4 kids)
I've also been dealing with preterm contractions, and was in the hospital 4 times in the last week to get my contractions slowed/stopped. They would get 2-5 minutes apart, and were never regular %100 but definitely worrisome.
They did an FFN test today (fetal Fibronectin?) to see if I'll likely go into labor within the next 14 days. That would NOT be good. I will find out the results tomorrow. 3 of my visits to the hospital ended with a few hrs of monitoring and 2 shots of terbutaline each time, and 1 was with 1 1/2 hrs monitoring and procardia pills to stop ctx.
Good news is that my cervix hasn't changed really other than being about %50 effaced which I believe is fairly normal. The doctors told me that in their opinion, they think the contractions WONT lead to preterm labor/birth but are just a pain in the rear.

mason has been kicking and moving ALOT and each time they try to put monitors on me or use the doppler, he kicks the heck out of it since he doesn't like it. lol

Teacher and therapies

Yesterday TJ's teacher came over for the first time in just over a month, since she'd been on a break.
She went to pick him up thinking he would be light, and had to stop and readjust for a better grip because he's so heavy! she was suprised. lol,

Then we played with him, practicing tummy time, reaching for things, etc. And she got out her Oball which is a toy used in therapy that has holes to make it easier for baby to grasp and is very light. At one point she had managed to shove one of those jingling cat toys into the Oball through alot of determination (because it had to stretch the hole enough to fit through but couldn't be small enough to pop out and choke some child)

Well TJ focused on that little jingling ball, and he put two and two togther, at least in his own little way.
He decided he WANTED That ball in there so he grabbed the Oball with both hands, and tried to stick his tongue thru one of the holes to get the little jingle one. it was SO funny, he had this determined look on his face as he kept moving the toy back and forth (to bring the smaller ball towards his face)

It was HILARIOUS!! My little man is getting so smart, it's unbelievable. This morning he let us sleep in nice and late (10:15am!) and when he woke up daddy made his food and then brought him into our room to snuggle while we had him hooked up to his feeding pump. He kept looking at me and studying my face (not crosseyed either, lol) and then just softly making noises and "talking"...
I can't wait to see how he changes and grows over the next few months before Mason gets here!

To blog followers! PLEASE READ

I wanted to thank all those following my blog for their support. Especially Joy and Claire! :) You all are wonderful and the prayers/thoughts and love were always felt during our tough times. It's amazing that we get to celebrate TJ's FIRST birthday, because there were days we thought he might not make it.

I'll be posting plenty of pictures of his birthday. Friday we will go out as a family, have dinner and take a small cake (and plenty of baby wipes!) with us to let TJ experience. We want to do this as a family, since there have been so many things we nearly missed as a family (christmas, thanksgiving, valentines day etc.) Then saturday we will have extended family and some friends for a small gathering just to do the cake thing and celebrate.

Thanks and I love you all!!!

CINDIE

SORRY! AND UPDATE! TJ birthday is FRIDAY Aug 14th!

So things with the baby are going well as well as with TJ. I apologize for not making the blog for Mason.

WE found out we're having a BOY his chromosome analysis came back NORMAL, and we find out in a few weeks if he has the skin disorder. He's growing and kicking and i'm almost 21 weeks now.

Recently TJ started LAUGHING, not just smiling. He's about 15 lbs now, and growing fast. He's learned to act out when daddy comes home. He'll thrash around and laugh til someone pays him attention, then when daddy goes out to work again from lunch, he will fuss for a couple hrs!

TJ also can now sit only semi supported, with just a chair or something behind him. Thanks to the bumbo we've used for about 6 weeks. He's more verbal but still no words. :)

If you know my myspace and would like to see video of him, it's myspace.com/martikadragoon, just send a friend invite and lemme know where your from (blogspot, babycenter, medhelp, etc..)

I'll be getting up the new blog as soon as possible!>

UPDATE!! TJ WILL BE A YEAR OLD ON FRIDAY!!!!!!!!!!!!!! YAY!!! Thanks to all our friends who've been with us through the entire ride with him. WIthout you we wouldn't have made it!

Cindie

16 weeks pregnant/update on TJ

Ok so I STILL haven't gotten around to making a separate blog for this baby. What I think I'm going to do is wait til the amnio results come back and we know if it's a boy/girl and if baby is healthy... I'll do as I did with TJ's blog originally which is take what I've written on other sites and paste it together so that I have a fluid timeline.

I'm 16+ weeks pregnant and have my amnio coming up wednesday. I've been having an issue of nearly blacking out lately. I'll be walking around or standing and all of a sudden be dizzy/tunnel vision/far away hearing and start to fall over... so I have to lean on something or sit and splash my face with water. I also try to drink soemthing. but my dr's haven't told me if it's low blood suger, or heat or whatnot... i'm completely exhausted all the time too! lol.

Baby is moving around lately and I began feeling kicks and stuff at 16w mark a few days ago. I'll post about my amnio/level2 ultrasound after I have it.
my doctors also referred me to a pain management doctor to have them find a treatment for my back pain. So I've got to wait for that referral to go through.

TJ is doing well. We are working with a bumbo and little man can sign Mama now. We are fairly certain that he's teething right now. Because everyday he gets fussy for HOURS. the only thing that stops it is tylenol. We can feel 2 little bumps trying to pop up. One on his lower jaw one of the upper...

HUBBY GOT A PROMOTION! He's now DEPARTMENT MANAGER where he works. It's taken 2 years for him to get this position. It means a hefty raise and possibility of good bonuses every 2 weeks. (like $250 extra)

So we are doing well!

TJ Update~ Got hearing test back!

U/S at 12w4d!

So yesterday, June 16th (ok 2 days ago) we went in for TJ's ABR test and new tubes to be put in and his ears cleaned.

We FINALLY got some encouraging news! We found out TJ has only Moderate hearing loss, so he's not profoundly deaf, only hard of hearing meaning that hearing aids may work for him and he might grow out of some of the hearing issues as his ear canals grow!

According to the dr. his hearing levels are 45 in one ear and 55 in the other... or according to my research he has approx %30 hearing loss in one ear and %45 in another. He will get to learn to speak and hear and say Mommy and Daddy! :) Since he had that surgery for the tubes, he turns his head and wakes up at noise! it's really cool! We're happy to know he can hear mommy's and daddy's voice!

Also, since he's been taking his tylenol orally, we decided to try some babyfood on him today and fed him some applesauce. He did SO great! he HATES the baby spoon for some reason.. a sensory thing I think, but he ate 1/3 jar of applesauce! he wasn't extruding it or anything. he'd actually swallow it! We haven't gotten the "official" ok on feeding him orally yet but his Speech therapist and OT both mentioned they think he can eat orally but would like to get the "OFFICIAL" ok from his gastrointerologist.

We also had an ultrasound for this little peanut growing in my belly and baby looks GREAT. I still measure on track for a Xmas Day miracle! We scheduled my amnio for July 14th so wish me luck that we have a healthy baby (GIRL!) lol.
I'll know approx 7-10days after the amnio if it's a girl and if there are chromosome problems. then 8 weeks after we'll know if baby has my skin disorder. We're excited and a bit nervous.

We got a GREAT sonographer (sp?) who played with the U/S machine for about 30 min showing us 3D and blood flow and everything. He wasn't looking for more than CRL length and est. gest age. that was it.

he said baby looks great and we got to see him or her kicking and moving around.

10 Weeks Pregnant!! Update on TJ

Well, this week I am 10 weeks pregnant. I'm currently waiting for a referral to go through to the maternal fetal medicine clinic. I rented a baby doppler from Babybeats.com and got it the day I turned 10 weeks. The first day I tried I couldn't find the heartbeat, but I tried again the second day and found it! 150's and strong!!!!

We took TJ to go see his pediatrician a couple days ago (friday) and she said he's doing GREAT and to keep doing what we're doing. he is 23 3/4 inches long and 12lbs 1 oz!!!!!!!!!!

He kept trying to roll off the table on her. He had to get some of his 9 month shots... poor little guy had to get 3 different injections! he really hated it. he's been very fussy ever since.

he's also gotten a new habit of just crying for about 15 min. before falling asleep when he's tired. he cries like somebody's beating him! lol. So we have to leave him in his crib to cry it out for a bit and then fall asleep. As soon as I get in to see MFM at loma linda, I'll start the new blog. I just want to be sure this baby is doing well..... and I want to have info to actually blog about! lol..


Cindie

Saw Little bean's heartbeat!!! Next blog saga will be soon!!

Well TJ is doing WONDERFULLY!!! He's begun rolling.. almost all the way over, and playing the "kicking game" where he tries to kick his diaper off when we try to change him.

Today I had a U/S to see if we had a viable pregnancy.... they said I'm about 6w3d... I SAW A HEARTBEAT!!!! I'm so excited. Based on my past history my OB is sending me back to the high risk clinic at Loma Linda.... so I am happy to go to doctors who KNOW me!

I'm gonna have 2 blogs! Baby #2 is due in Dec. 09

This is TJ on Easter! SO CUTE..... and below it the BFP I got yesterday!

I found out yesterday that DH and I are expecting baby number 2. As of right now based on LMP I'm due Dec. 20th a day after my little brothers birthday.

I plan on starting a second blog to add as soon as the pregnancy is verified as viable. I tested on CD 25-32.... the night of CD31 I got a negative. The next morning for no particular reason I took my last test... It was a Digital EPT... I got a positive. We are super excited.

We want TJ to have a sibling close in age to him. We feel that he'll have a friend to play with as he grows up and so will his sister or brother. Also we hope that he'll be challenged to learn more. I have tried to NEVER mentally place limitations on what I think TJ can and will be able to do. He already is learning so much. (he knows to fuss if he wants attention!) and a bunch of other stuff. Health wise he's doing GREAT. his chest is healed up, he got a Mickey button a couple days ago. and he's gaining weight!)

We are really hoping for a daughter, and after this baby I'm getting an IUD for 4 or 5 years. Then we'll have 1 more.

The Genetic counsellor told me when I got my positive amnio results for down syndrome with TJ that I have a 1/100 chance of D/S now.

HOWEVER~ I was also told that it's very rare to have 2 babies with D/S unless you have a translocation. That form of D/S has around a %25 chance.

So far I'm only considered 4 weeks along (actually 2 but they count you as being pregnant from the day of your last period) I get my blood test results back this afternoon to get my exact levels.

Unfortunately when I called the OBGYN's in my area they told me that since I was so high risk with TJ (I personally had dehydration and HG. but they count me higher risk because of TJ having D/S and EHK)

They said that they'd just refer me to MFM at loma linda. (maternal fetal medicine)

So When I went by my Primary Dr.'s office yesterday for the paperwork I asked if he could just refer me instead of waiting for an obgyn to do it.

DH and I are excited but nervous because with everything that happened with TJ. We're praying that we get a happy, and healthy baby. We will love this baby just as much as TJ and I do NOT plan on playing favorites with them!

So far I've delt with HORRIBLE bloating, and some mild cramping as my main symptoms... also I've been running warmer than usual even tho I have no fever. (Carlos actually noticed it a couple days before my bfp)

I am starting this pregnancy out as healthy as possible. I'm taking only tylenol for headaches and backaches unless my OB tells me other wise or finds a safe treatment for my back.

and I'm taking extra calcium, 1mg folic acid, iron, and prenatals(normal amt) because with TJ my calcium was depleted as well as some of my other minerals and vitamins. I'm also trying to drink more water starting right away.

After this post I'll have 2 blogs going, 1 for TJ and one for this pregnancy and the baby.

Keep my family in your prayers that we can be able to welcome a healthy baby into this world.

Because as long as this child is healthy, Carlos will only have to take 1 maybe 2 weeks off work, and we'll be able to actually SURVIVE the holidays. :) last year he took 7 weeks off and wound up not getting paid for ANY of it due to a mix up with his disability coverage. And I'll continue receiving income too. We wanted to be sure we were prepared for this next baby before we have him or her (HOPEFULLY HER)

Thanks and I hope all of you will continue to follow this blog as well as the new one! I'll start that in about a week or so!

New post SORRY I haven't been on in a while.

Well, TJ's doing great this week. Carlos and I went to Arkansas for my best friend's wedding as well as to see my father.
Tyler's Gtube ports popped off the day we got back, so I took him in to get it fixed and all is well now.
he's been showing ALOT more attention and playing with his toys and stuff more. He likes to tough ppl and things. which is AWESOME.

He's FINALLY on only 1 true med, his thyroid med, and a bunch of vitamins to help him gain weight.
I've got some new pictures to post and will add them soon.

TJ's wound is healing GREAT. It's nearly closed, and just needs a tiny bit of packing. I can't wait til it's fully healed. We've still got a while til his sternum is healed completely.

CPS is still giving us issues so I'm writing the worker a letter telling her to leave us alone, as well as not taking any crap from them anymore.

TJ is HOME!!!!!!!!!!!!!!!

TJ is home, and he's doing well. I'm not going on a whole lot of sleep but what I got was good sleep so I feel pretty rested.
I had to learn how to care for a picc line and was taught in an emergency how to put a new dressing. I had to be taught to clean the port for 30 sec. with an alcahol wipe.
flush w/saline (prefilled syring)
give his first antibiotic,
Flush again,
2nd antibiotics,
Flush again and flush with 2 ml's of heparin (from a 5 ml prefilled syringe)
He's also on some protein poweder and an Oil also.... And they gave me apump to use with his Gtube so we are using it at night, (he has an apnea alarm on, it'll ring if he were to throw up)
and it's already preset.
the REAL hard thing was remembering the A) apnea monitor, and B) how to do the picc meds correctly using protocol.
it turns out that IEHP doesn't pay for dressings for his chest but his nurse (FINALLY One who liked me) ordered a whole lot of gauze and Coban. They gave me a TON of supplies. Give me a bit to find my camera, since it got lost in the madness yesterday!
and I'll post the pics of his last days in the hospital and now here at home! lol Thanks alot for all the prayers!

The journey isn't over tho... it's only begun because he's not out of the woods yet AND he's not grown up!~

Praise REPORT!!!!! TJ's Coming HOME.

This is TJ on 2/19 playing with his feet. He had been trying to reach them all day and had also been rubbing his feet together and pulling them up... so his daddy helped him and he finally grabbed on.... see the look of determination?

Guess WHAT?!?!

After 3+ long months in the cardiac ICU, many tears and heartache.....

TJ comes home MONDAY 2/23! lol. It's 4am here and I woke up and can't sleep because I'm so excited. They have even given him the go ahead to go on our trip to OK/Arkansas. He's gonna be on some medicine pumps for his picc line (Antibiotics) until the 26th and we may be going back to an NG tube because his Gtube is getting infected looking. ( TMI: to me it looks like my belly button piercing did when it rejected the belly ring with a bit of dying tissue)

So they're getting Dr. Golkar (his Dermatologist who has experience with our skin problem) in ASAP to decide if it stays or goes. and they are gonna teach me/hubby/ and my mom how to do the dressing change on his Picc line and wound, etc. They have already begun the discharge process and barring any unforseen complications they are sending him home on MONDAY lol.I wanted to update my blog (can't find my camera to upload my pics... darn it. and thanks so much for all the prayers and well wishes.

Cindie

BIG UPDATE: 2/11/2009 GTUBE!

So TJ's doctor at the hospital called me this morning regarding the Gtube.
She said they DID get his pediatric dermatologist in there to evaluate his risk for infection, and the derm. said that with her experience with the skin condition, that she thinks a Gtube would be alright.She said that it will allow him to get more nutrients, and to grow more efficiently, and that we'll just have to monitor it REALLY closely for any infection.So when they told me that she'd come in and consented also I went ahead and gave consent. They promised me that they'd keep a super close eye on him for infection.
Also, the woman from CPS called me and told me that Next week after the holiday she's speaking to her supervisor to tell her that she reccomends they shut down his case.She said that after her evaluation she sees NO signs of neglect in any way, so she doesn't see any problems.
Turns out also that she didn't know the social worker from the hospital who originally reported us has been asking everyone I know so many personal questions about me and my family. Including about our finances (not even general questions, actual really personal questions about what exactly OUR money goes on. They aren't even questions regarding TJ's care, expenses...e tc)
She advised me to just make sure I don't have any more clashes with the staff and to "keep my nose clean"
She told me that to her, the social worker from the hospital has it out for me, and is just TRYING To find something on me so she can report it. And that's it. She thinks that everything is fine and that they will be closing the case soon as long as they can get the dr.'s records from the hospital.
So all is fine, and she thinks it's great that TJ will most likely be going with us on vacation to meet his grandpa and his great grandparents.
I am pretty happy that things have turned out ok. and as long as TJ's Gtube area heals well he'll still be coming home on the 17th or 18th when his antibiotics are finished.

I'll add more when I get pics of TJ and his new Gtube tomorrow. :)

TJ update 2/09/2009~ Update on TJ coming home!

Ok, This is pretty long, I’m covering a lot, sorry.

So here’s the deal, if TJ weren’t still on antibiotics Via PICC line and being considered for a Gtube, then he’d be home in a day or two.
He’s got until the 17th for his antibiotics to be finished with, and he’s on Vanco given via PICC line. Normally they’d send him home with a picc line, however they haven’t been using the typical dressing so his line isn’t held in by much more than a piece of gauze and some coban.

I personally don’t feel comfortable bringing him home with it because A) it’s not dressed so that it’s watertight, and B) what would I do if the dressing came off or the Picc line came out one night?

So, I’m going to ask that they keep him until the 17th (or 18th.. Depending on if it’s day or night he’s done with the antibiotics) I’m also asking them to consider closing up his chest since it hasn’t healed really over the last 2 weeks. There isn’t any active infection any longer.

Tyler is currently about 4.5 kilos and was very VERY Grumpy today. They are still weaning him on his pain meds so I’m sure that’s why. His nurse did ask the doctors this morning to suspend his weaning for the day due to him being so agitated. Luckily he’s had NO problems with Temps or Desats the last few days.


Here is what’s happened with him today:
I had a consult with his doctors and the Respiratory Therapists.
TJ gets Pulmacord (spelling?) 2x a day just to open up his lungs and reduce any inflammation. I know some of you have voiced that you are worried about me considering bringing him along on our family vacation to Ark/Ok.

And I asked the doctors about it (as was the plan) .

According to the RT, as long as we are fully prepared with his meds, and his other doctors clear him, AND we are prepared for a cold if he gets one, she has cleared him to fly to Ark. With us.
She thinks that because he’s had his RSV shot and is current with vaccinations that he should be just fine. The main doctor on his Primary team has told me that once TJ gets the all clear from Cardiology, and if he gets the Gtube~ Gastroenterology, and his pediatrician that he’ll be ok to go, especially since it‘s only 8 days (7nights).

He said that when they release TJ he’ll be healthy and fine (he’s healthy now, just isn’t eating on his own yet) That TJ should be ok to go on the trip. He said they wouldn’t be releasing him if he weren’t healthy enough to be around other people or outside.
We will have him home for at least 2 weeks anyway before the trip, so we can get him re acclimated to being home before we go. AND if the pediatrician isn’t comfortable with him going, then we’ll have his grandma watch him.

I spoke also to the primary doctor about the G-Tube, and here’s what we decided until I speak with gastroenterology~:
He’s had the NG tube for 6 months off and on. I made it clear that my concern for infection with a Gtube Is MUCH more than with a simple NG tube. Because we know what to expect from an NG tube. We can easily handle a sinus infection or something like that should he even get one. I use sterile supplies when placing his tube, and sterilize the tube itself if I need to Re-place it.

1) They will get a consult from TJ’s Pediatric Dermatologist to get the all clear on a Gtube.
2) They’ll speak to speech to get the OK to train me to begin bottle feeding TJ so that I can work with him on a regular basis.
3) They will consider leaving in the NG tube and having follow up appointments at 1 or two months post discharge so that I’ll have a chance to get him nippling all his feeds by mouth.

If he’s not nippling it all by then, then they will go ahead with a Gtube.


I also left a small page of questions for each, “Dermatology, Cardiology, Gastroenterology, and Endo.” As well as a page of notes and contact information for TJ’s case manager through Regional Center, and Contact information for the people we know with the F.I.R.S.T. foundation (for ppl with Ichthyosis).
And when speaking to his Primary doctor I got a list of his medications, along with the meds they think he’ll continue after discharge.

Now I can make my medication schedule (yay!) and get our “system” set up so that the lady with CPS can see it when she comes by Wednesday.

I waited for 4 hrs to speak with speech, as well as the GI doctors. But they couldn’t make it which I understand. Hopefully the nurse will be able to get answers to my questions.

So everything has been discussed, and of course, we will be speaking to his doctors after he gets discharged before we book it, and if they say no then he won’t go. I’m not going to go against doctors orders, and I really don’t want to end up with TJ having an infection or ending up really sick. (a cold isn’t REALLY sick, kids always get colds……)

But if they continue to clear it before I schedule it, then we’re going to all go as a family, and I’ll just plan for any emergency as best as possible and get a doctor lined up in Ft. Smith or even Ok. City (great hospital there)

So be sure, I’m not asking what people think about us taking TJ along.
I’m simply letting you know that I’m doing all possible to make sure he’s healthy before during and after the trip. As well as updating all of you on how he’s doing health wise.

Cindie

TJ's Coming home next week!!! I NEED Flying/Traveling Tips!

Ok, so according to everyone (including CPS) TJ is all set to come home next week! it's great!!

However, other than that, if the doctors give us the go ahead to travel to Oklahoma in March (11th-18th) then we will.

I'll be speaking with his doctor on Monday about it. they also want to place a Gtube but I'm saying no until they can get a consult with his dermatologist simply because he's ALREADY so immunocompromised that he can't just go, get one and go home... our luck he'd get another bad infection requiring CPS to be called AGAIN and for him to go back to the hospital for another 2 months.

Anywayse, he's learning to suck from a bottle with speech when they do therapy. (he WANTS to suck now when he gets hungry. he starts sucking on his lips/hands/my hand...etc, and he'll lick his lips til he gets his feeding thru NGtube)

So, as for the Gtube til they get a consult I'm NOT signing the paperwork... and he's been on an NGtube for a while... I know how to easily handle that. I've been trained (as have my hubby and mom) to place it and check placement and feed and give meds thru it. They trained me before he was released from NICU 5mo. ago.

Does anyone have TIPS ON TRAVELING WITH AN INFANT?

So far, i've got plans for meds, an emergency doctor if need be. but other than that I'm stumped!

I'm going to call americanairlines about setting up some travel arrangements, and ask some questions... but I need tips from you moms!

What should I pack for emergencies? (other than extra meds)

How much formula should I bring (not mixed...)
What about diapers/wipes?

Extra bibs?

Clothes?

Blankets?

What kind of stroller can I travel with? My own that is Grayco? (it's the fold down type, you twist the handle, push a button and it folds down)

Can I bring my carseat that goes with the stroller?

(I know it has to be FAA approved)

Anything would be helpful!!!

Cindie

Support! The hospital called CPS on me for personality conflicts with staff and other stuff...

Ok ladies, I need advice BIG TIME. You may know my whole story if you've followed my blog/pics... etc. See, according to the social worker at the hospital, I've acted suspiciously from side effects of a medication on a time or two while being at the hospital (due to back pain and pain management, they are trying to find something tha'll work before they start shots or something in my back.)I NEVER held or helped with TJ during any time I had any side effects. and according to my dr. I had to take the med at a certain time each day. I've been working to find other meds that work without any side effects and that are safe to take and work in small doses...(so I could get off quickly if need be due to any reason.) Well, the social worker from the hospital has asked for my medical records, and pharmacy records which I got copies of , and signed releases, no problems. I've not done anything bad. But due to personality clashes with a charge nurse and a couple nurses who wouldn't have me help with wound changing (even tho, apparently they are sending him home next week.... IF the do.) *they actually leave me in the room alone with the nurse watching the OTHER baby in the room with him, while sitting outside.... doing NOTHING to help me out or even offering support.
or other stuff, it's caused alot of issues (I've kept my cool and tried to either reason with them or accept what they tell me)they'd told me he'd go home in MARCH or late Feb. it was lies. CPS came by today, with a nurse, and GRILLED me infront of my mom regarding his skin care (for EHK) and his cares for him having down syndrome. welI (Gmom and me) explained everything, and even showed them his medicine preparations (color coded with 2 days worth. a normal day and emergency, with color coded baggies, instructions on time, doseage already prepared... etc.) so anyone could give him a med if I had an emergency and couldn't be home.
The nurse was HAPPY with me and said we've done a D*MN good job at keeping him healthy when he was home. But the social worker even asked me for a friggin drug test where I had to go to a place where addicts from the court systems usually go (not the kind work sends you to) and get WATCHED while I took the pee test! (I have NO issues with former addicts at all.... i'm happy if you've straightened out and I'd be happy to share stories and talk for support as my step dad died of an overdose about a year ago this march....They dont know of that.)
I did it happily, and we got a crib today (instead of a bassinet even tho he's only 10 lbs at nearly 6 months) set it up, and cleaned house. They come out next week and just told me if our house was clean, and his room was clean, and we were prepared for him to come home....we'd be good.
IDK, they make me feel like a bad mom. They consider me either uneducated or unexperienced even at this point in his life where he's been home for 9 weeks total, and we've cared for him for his first 3 months of life DAILY, and nightly.I'ts 4:30am and I can't sleep from the stress. AF is late due to it also (bloated....but day 31...test BFN which is fine at this point)
His nurse, and teacher from the Reginal center (sp?) are behind us because they have observed us in our home on a couple occasions...
They hadn't told me test results, or anything but told CPS he's coming home next week (I've called and asked 2x while cleaning up the house) all while it's cold and the arthritis in my back is HURTING bad. Icy hot, heat pads, ibuprofen, tylenol... the works to treat it. But nothing to really alter me mentally at all.
I want advice. my mom went thru this with me as a baby (similar reasons..young, special needs kid... etc.)and my grandmother was gone after also for me mom (same stuff as MY MOM).
They got me so upset I just cried for about 10 min. in front of them as I told them how we cared for him in the NICU for over a month and the nurses didn't even do anything because carlos and I did EVERYTHING but paperwork.
I'm crying now thinking of it. I need support and advice.........(or just kind words)...

New Pics as of 1/21 and on.

This is new pics of TJ. He always has that index finger and thumb together...... he's got the perfect eyes, mixed drk blue and specks of brown. the reason I sat him up was because PT asked me to.

TJ update 1/28/2008

So tj didn't get to come home yet. He got another infection in his chest this one much more minor. Cultures revealed that it was staph, just like the kind we carry on our skin but it had invaded his wound. They're treating it with a round of 4 weeks worth of Vancomycin (spelling>?)

TJ's dropped to somewhere around 10+lbs, but the last few days when I was there he was doing great. He'd been playing with me and playing with his daddy when Carlos was around, and just generally driving all the nurses crazy. He's become somewhat of an attention hog the last few days, and if he doesn't get the attention he wants he pouts and cries. It's horribly cute. :) They're now talking of TJ coming home in a week maybe two. He's still showing alot of oral aversions, however two days ago with me working with him thruought the day he got over his oral aversion at least for a while. I could stick a pacifier in his mouth without him gagging. But he'd just chew on it. Now that he's been off the ventilator for a while hes showing so much more of his personality~ He's been making good progress with physical therapy as well as Occupational therapy!

There's still a very good chance he will come home on an NG tube or even possibly a "kangaroo Pump". So, now I guess they're talking a week or so,. None of understands why they don't send him home if RSV is running around the hospital and he can be sent with a PICC line in place anywayse

Cindie

TJ update 1/18/2008~ TJ SHOULD BE GOING HOME THIS WEEK!!!!

Grandma Karen with TJ (my mom) TJ's doggie, Kratos, HUGE at 4 mo. 45lbs

TJ was making funny faces! and just LOOKING at us! and he kept looking at the monitors, I shouldve gotten pics of him straining for it. He was REALLY looking at it! (stretching his head WAY back to see it)

OK, here's whats going on. TJ was taken off of the vent mid week last week, and as of friday had gotten taken off CPAP after about a day and 1/2 on it. He's 11 lbs (i wrote he was 11 lbs before, but I misestimated, he was about 10 1/2 lbs)

Don't worry about all the tape and stuff, it's just to hold his oxygen and NG tube in and cover his wound. It's uncovered now! I only wanted to show how huge he's gotten!

He's a BIG boy. I've got pictures to add! anywayse... last night he was very upset and agitated, they thought he was going thru withdrawal from the pain meds still (morphine and adavan)

So they added a little pain killer to his meds (methadone)

He keeps spiking fevers, up to 104*F tonight, but it's only for short time periods. He's very environmental in the fact that when swaddled, even with a thin blanket he's prone to overheating (due to the skin problem) or if he gets agitated and mad.

Tonight, we were moving him around, his oxygen slipped off and his chin was to his chest for a couple seconds . his tongue poked out, it was blue so I thought they'd tried to get him some meds that had a funny color. It turns out that even though his face was normal his O2 was low and dipping abit. It came right back and his tongue pinked up right away.

They'll send him home on oxygen, but we've got that covered. he's got plenty of oxygen and everything he needs.

Due to being on the vent for so long he's developed an aversion somewhat so OT and PT are coming in monday to evaluate him and try nippling abit. Unfortunately I wont' see him til wed. when DH gets off. That's ok because I'll call every day and night.

Something cute to add: I had a little girl at the hospital today run up and hug my legs, out of nowhere... then her parents got her and she ran back again (2 yrs old) it was hilarious! she wanted me to pick her up, so I did and sat her next to her daddy ... I said 'say byby, I gotta go!!!" and she waved and kept grinning!

Also, TJ has a 10 month old in a bed next to him. I thought maybe the baby had D/S but it wasn't until I spoke to her parents (hispanic, mom spoke little english but dad was fluent)

They said," Yea, our son has down syndrome" and I replied, "really? My little guy has it too!! that's kind of cool!"

They told me that dad has a sister with down syndrome. I'm wondering if maybe there's a translocation going on. mainly because they did a genetic test on the baby but never said exactly what type of D/S baby had. just that he had it. He's totally cute, and HUGE OMG this kid is BIG. lol, He kept playing with his cords, his feet... everything. I am kind of happy TJ is only 5 mo old right now, because he's an easier baby at this age. If he were closer to a year, he'd need to be entertained a whole lot. (I could do it. it's easier than just sitting there watching him be on a vent or CPAP)

They don't know if he'll make it to my best friends wedding in march. we're hoping but if not my mom said she'd care for him while we're gone. (I may be in the wedding party... she asked for my measurements and all, but if she decides not to, it doesn't bother me. I'd be happy just to be there! she was here for mine after all)

They are speaking of him coming home on WEDNESDAY OR THURSDAY!!! It's great, but we've gotta make sure he's stable for it. They're also gonna do a hearing test either tomorrow or the day after, we're VERY excited to hear about this.

here's all the pics from lately!

TJ update 1/12/2008

OK so TJ weighed in at about 10lbs 12oz or so. He's looking great. they are talking about removing his wound vac On monday (today) and seeing how he does. they're also trying to get him off the vent. slowly.

He was asleep the whole time we were there, and one of the nurses had clipped his nails even tho it's against protocol. (I don't mind) we noticed when I brought clippers to clip his nails.

That's all that's new for now. Hopefully my next update will be better... (like they take the tube out of his throat! lol)

Cindie

Pics from yesterday.. (camera didn't delete them)

Look, He was grabbing and feeling on his bear!!!!!!!!!!!!!!!!!

These are all of TJ yesterday. He was mouthing the Felt banana peel of his Curious George even with the NG and breathing tubes in! it was so cute!

He held the nurses hand

Still with the banana. When I moved it he'd lick his tongue around and smack his mouth as best he could!

TJ update 1/06/2009, making lots of progress! (and his daddy and I's 6 yr anniversary!)

He's awake!!!!!!!!!

he's not uncomfortable with this tube too bad, just sleepy!

what a little porkey pie! He's tipping the scales at just about 11 lbs!

TJ's currently at a rate of 14 on the respirator and doing great with Sat's in the 90's. His wound is closed up past the bone, and tissue has covered the spot. They are debating on whether to stitch him up and send him home or what...... I hope they let him heal a bit more, then stitch him up!

sleepy baby..... He has LONG fingernails that I need to cut next time I see him

Here are the most recent pictures of TJ, and Us. I included one of Carlos and I's 6 year DATING anniversary!we count the dating one as well as the wedding..... We hit the town (movies and dinner). it was Me, Carlos, Jon(middle brother 18yrs old) and his girlfriend Amanda. Their first date and I thougth a nice way to treat them to something special! She's really Nice!

on to TJ, TJ has been feeling stuff and even with the Vent in he was trying to lick things! Including his curious George toy courtesy of the neighbor. He was grabbing his bear (reaching out to touch the fur... but for some reason those particular pics got deleted, darn it! my camera is set to delete pics after they're uploaded... for some reason it either didn't take a few pics or just didn't upload them!

I have asked the nurses to call me as soon as he's extubated and handling it because I want to feed him by mouth the first time! We only get a few months before he will be eating solids or cereal! He didn't have any teeth coming thru today even tho I thought he'd had some before.....

That's our update fro today!