My Poor Baby..

So as many of you know Raygen has been fighting a cold ALL month long.  She has been pretty fussy, congested and just plain ole' not feeling good.  So we have been going to her pediatrician about every week.  Her first appointment her left ear was infected.  Raygen then spent 10 days on meds and on her follow up appointment her right ear was infected so another 10 days on meds.  Now I thought at the end of last week she was finally over this cold but Tuesday it started up again.  She has been supper fussy, cranky, puky and just didn't look like she felt good.  So today I took her back and now BOTH her ears are infected.  My poor little girl.  We are now trying a stronger antibiotic in hopes that it will clear up her ear infections and wipe out all her congestion.  But since it's such a strong antibiotic we have to watch for other things like diaper rash or other "girl" infections so I'm a little stressed.  I am tired.  I know my baby is tired.  I hope in a couple days she will feel better and we can all get a little more rest.  I sure do miss my happy smiley baby.  I just don't want "tubes" to be brought up.  Raygen has been through enough but I'm a little nervous having 4 ear infections in one month.

Big Changes...

 Raygen is officially done sleeping on her wedge on our floor.  She has moved to the crib.  She was getting too big for the wedge and would roll off it during the night so she was always surrounded by pillows so I thought last night it was time to make some changes.

 She did awesome.  She woke up her normal amount of times and I helped her get comfortable and back to sleep she went.

 I know we will probably have some rough nights of adjusting but my plan is to hold tight and not go back to the wedge. 

 Raygen also got a new car seat.  It is a adjustment.  I miss loading her up in the house and just snapping her in the car.  I really will miss the infant seat.  Plus this car seat puts Raygen in perfect height to kick her dvd player the whole time she is in the car.  She turns it off, restarts the movies, turns it off and on and so on the whole time she is in the car. 

Here a sweet picture of my "big" girl!!  We love you Zoie!

1st Bath!!!

Yes I know technically this isn't Raygen's 1st bath but it is just as important or more so to me.  It is Raygen's first bath in the "big girl" bath tub.  Up to this point we have given Raygen a bath in a baby tub on our dining room table (especially with the trach, couldn't risk water going down our child's only airway.) and on her wedge since she has outgrown her baby tub.  She is such a wiggle worm that it has gotten to hard to sponge bath her so I thought I'd take a chance and try our tub and see what she thought.  The reason I haven't tried sooner is we were told with her g-tube that we can't "soak" it in water because the dirty water could seep into her tummy or infect her tube so that is why I just did sponge baths.  But overall the bath in the "big girl" tub was pretty awesome.  You can see from the pictures that Raygen didn't really like it but she didn't freak out either.  It was so quick and I even got her hair washed.  I can do this all by myself which is so amazing to me it just makes me want to laugh with excitement.  I know that may sound silly but there has been so many aspects of caring for Raygen that I always had to wait on someone else to help me so each thing that I can take over and do it alone, just the two of us, is beyond words.  Thankfully though, our first bath, we had big sister Zoie there to help.  Zoie did great.  She helped hand me things and we sang to Raygen the whole time.  I am so lucky to have Zoie.  What two sweet girls I have.

 "I don't know about this mom?"

"Okay, keep singing and I won't cry."

Pig tails and Doc update...

 Raygen's first pig tails!!!

 Doesn't she look cute?

 Snoozing before work this morning.  She needed an 8am nap today since she woke up at 4:30am.

 Ooh how I love seeing those pretty teeth!

 If you follow our blog you will know that Raygen is in love with Toy Story so when I saw this shirt at Old Navy I couldn't resist.  I know it's a boy shirt, but

she loves Buzz and Woody so she had to have the shirt.

So quick doc update...

Raygen is finally getting better I think.  She has been sleeping more and coughing less.  She still sounds "junky" but a big improvement from last week.  Dr. Polley said that Raygen still had fluid in her ears, but the puss was gone so she felt like the fluid would go away in time.  Dr Polley did say if her cold got worse again that most likely she would get another ear infection.  Raygen isn't out of the woods for ear infections till that fluid is gone and that will just take time.  Raygen's lungs sounded good and all her "junkiness" is all upper airway.  Dr Polley did still see some stuff going down the back of Raygen's throat.  So I guess it all comes down to "time."  If Raygen doesn't sound all better by the middle of next week then we will take her back or if she starts to get worse again we will take her back sooner.  For the one year shots that we are a little behind on we will wait till Raygen sounds normal again because if she spikes a fever we want to know why not guess that it could be her cold or the shots.

So I think things are moving in the right direction.  I know Raygen has been more active and giving us a lot more of those beautiful smiles.  So I hope in a few more days she will be 100% again.

It's Official I can roll over!

It's official Raygen can roll over!!!  She is rolling everywhere and scooting all over the place.  It's amazing how she can move around on her back to get somewhere, lol!  She still has no desire what so ever to sit up on her own but I know she could if she just tried.  I'm so proud of her.

I didn't end up taking her to the doctor earlier this week.  I called and they wanted to see her Friday.  So we are going tomorrow.  I do think she is over the worse part of this cold but if you listen she still sounds kinda congested.  Thank you all for all you prayers.  I'm so proud of our girl.  Rolling over and making it through a cold at home all in the same month!!!  Raygen is a busy baby!  Next it will be her saying "mamma"  well I can hope, right?  Hope you all have a nice Memorial weekend.  We will be busy bee's around here so I'll have lots of pictures to post.  Maybe a better roll over video too.  She caught me off guard on this one.

Hanging in there.

 Raygen in her Cookie Monster "Cookie Crazy" shirt, lol!!  Just fits her little personality so well.

 I just pretend this is food.  I know she would be this way about ice cream if she would just try it, lol!

 Chewing away.

 She loves to chew on her fingers.

 I love this picture.  She is just like "Really mom! Really!"

 "Give me that camera!"

So I'm pretty sure that we are taking Raygen to the doctor again tomorrow.  I know you can't really tell from the pictures that she doesn't feel that great but you should "hear" her.  She sounds horrible.  It is so sad at night when all she wants to do is sleep but instead all she gets to do is cough till she makes herself sick.  Thank God she hasn't had any fevers and her O2 has been staying good.  It's so hard to tell if she just sounds worse because she still has the one paralyzed vocal cord or if this little bug she has just wont leave.  I'm just praying that no one else in our house catches it.  I don't want to be passing this around in circles here.  Besides her cold, Raygen seems to be doing good.  She is rolling over onto her tummy and then  making it back to her back which is so awesome.  When she has been on her tummy she has been pushing her behind in the air so crawling may be in our near future.  Her right arm may hold her back a little.  With it having the blood clot in it and it being a little weaker then her left she isn't able to hold herself up enough yet to crawl but I see it coming.  Raygen is such a good baby.  She is always making us smile and laugh.  Her facial expressions let you know exactly what she thinks.  Zoie and Raygen have that in common.  I will post tomorrow and let you know what her doc thinks.  Thank you to everyone for your prayers. 

Our Princess

Go Away Cold

 Zoie went late to school.  I was not waking my baby.  She got up around 4am and finally fell back to sleep around 6am so Zoie was pretty happy to snuggle with her sister.

 My poor baby.  I just hate to see her sick. 

My poor girl is still not feeling good.  She is very congested and still has a pretty good cough.  When Raygen has a coughing fit it usually leads to a throw up and dry heaves, it so sad.  Since she still has one paralyzed vocal cord I think it is alot harder for Raygen to clear herself after she coughs to move all that junk around so she ends up puking.  It's so sad.  I just hold her and rock her after till she catches her breathe.  So far no fevers, Thank God and her O2 has stayed good so we are still just trying to get through this from home.  She is still on an antibiotic for her ear infection and I have kept up on Tylenol every 4 hours.  Raygen seems playful during the day but at bed time it really kicks in.  She just can not get comfortable and just tosses and turns.  I know her poor little head is all stuffed and she can't breathe as good so it just frustrates her till she cries.  I hope tonight will be better and hopefully this weekend she will be back to her normal self.

Another Ear Infection

Raygen had a horrible night last night.  She just couldn't get comfortable and would only sleep about 20 minutes at a time before waking up crying.  I tried everything rocking, walking, changing her positions but nothing helped.  Finally at 4:30 I gave her some Tylenol and she spit it right up.  She had another big puke about 20 minutes later.  I noticed she sounded very congested and she has this horrible cough that just sounds like it hurts.  Plus she was crying every time she coughed and grabbing her ear.  We had a doctor appointment scheduled already today for Raygen to get her 1 year shots which I was thankful for.  Well Raygen did not get her shots of course today.  Too risky.  If she spikes a temp or anything changes I don't want to think "maybe it was the shots."  So Dr Polley said that Raygen has another ear infection and that her throat is all red and she could see lot of "junk" in there.  So we are back on antibiotics again for 10 days.  My poor baby it's been a roller coaster with two ear infections, g-tube infection and teething.  So far her oxygen sats have been good and staying in her "normal" range same with her heart rate so right now I'm comfortable being at home.  If either of those change then we will take her straight to Children's.  Please pray that she will fight this little bug off at home and that she starts to feel better soon.  Thank you again for all your love, support and prayers.  Each one is felt and needed.

Happy Mother's Day!

 I am still in awe in how lucky I am and today I fully appreciate all that we have been through to get here.  All Raygen and Zoie went through this last year is amazing and today (and every other day) I just love being their mom.  I am so blessed to have to great girls.

 Don't you love Raygen's hair, lol!  I forgot to put it in a ponytail before we left our house. 

 This time last year we were in the hospital wondering if we would ever get to bring our baby girl home.  My stomach just goes into knots thinking of those times.  We were deciding if Raygen should get a trach.  So many tears I cried and how much I hurt to see her hurting and on a ventilator on Mother's day.  I thank god everyday for all his blessings and for my great girls.

 I hope everyone had a wonderful Mother's Day and I hope you all hugged your children a little tighter today.   

The wind got Raygen here and scared her a bit.  Poor girl she is still adjusting to life's "normals" and to getting out and about.

I had a wonderful Mother's Day weekend.  My husband spoiled me.  I got to go get my hair done yesterday and do some shopping.  He has also been working extra hard on remolding our home and I am just so proud of him and so lucky.  I guess I'm going to have to come up with something really good for him to do on Father's day. 

Tomorrow Raygen goes for a  check up and her 1 year shots (were still a little behind.)  I hate shots.  I know we have to go because she is still digging in her ears so I know they need checked but just knowing ahead of time she has to get poked gives me the worst tummy ache.  It's worse when she has to get labs.  It's just so hard always watching her be in pain and poked and messed with.  Sometimes I just want to grab her and start smacking hands away, lol!  I get bad in the hospital.  I just like us being home and our little normal, extra special family.

Happy Mother's Day!!!!

I love my....

 My two girls.  Zoie loved that she was able to rock Raygen to sleep.  She is such a good big sister.

 My Family.  Raygen looks so funny in this picture.  This was early in the morning before school so I don't think Zoie or Raygen were awake yet.

 Raygen played herself to sleep this morning.  She is such a good baby.  Ooh how my heart melts for her.

 Raygen loves her saucer and...

 her purse teether, lol!!

Ooh Raygen how we love you! 

Change of plans...

Okay so everyone has been asking me how Raygen's tube looks so if you don't want to see pictures don't scroll down.

 Here is Raygen's tube before the medicine.  It was kinda nasty looking and very sore to clean and to the touch.

Here is Raygen's tube now.  No discharge!!!  Still a little red but otherwise back to it's normal self.  It doesn't seem to bother her at all any more.  Cleaning and getting dressed she didn't even fuss the last few times.  SO I spoke with the IR doc at Children's and told him it was looking a lot better and it didn't seem to be causing her pain.  He said that was great.  He said a little red around the tube is nothing he'd worry about if the redness spread out or fanned out he would be concerned.  He recommends finishing the medicine and if it was still red and I wanted her to be seen to come on up to Seattle.  We still have four more days left of the medicine and I'm hoping by then all the redness will be gone.  If not I'll decide then whether we should head to Seattle.  Raygen does have to see her pediatrician on Monday for her one year shots :( and to have her ears checked again so I can always get her thoughts on her g-tube.  I'm so worried about her ears.  She keeps sticking her fingers in them.  I know she is still teething so I hope that is the reason and not another infection.  Thank goodness she has seemed happy the last two day.  Not fussy at all.  Thank God.

So I guess my week just got a lot less crazy.  Now Thursday I have muffins with mom with Zoie at her school and Raygen has an GI appt and new car seat :)  Thank you to everyone for all the prayers they were greatly needed and felt completely.  I will keep you all updated.  I hope by Friday Raygen's tube will be all better and we can have a good weekend.