Tiffany, Brian and Caylee went to DeVoss Hospital today in Grand Rapids for a meeting with the specialist to discuss Caylee’s progress.  The way I understand it is: they are going to try a different medication to lessen the reflux and if that doesn’t work, surgery is the next option.

 

They are trying to avoid having to do surgery, so please keep Caylee in your

prayers that this medication will do the trick.

I have had my miracle through the power of prayer, so who’s to say the s...

Continue reading ...

Continue reading ...

So sorry for lack of posts...  I have been bad about not getting things posted here -- sorry!

Tuesday, June 16, 2009

12 lbs & 12 oz!  7 oz gain from last week, perfect!
 
We are growing, we are puking, and we are pooping!  Right where a baby is supposed to be...right?
 
Caylee & I are heading to Toledo to visit with my family for the week... she has changed so much in just the last month.
 
She is regularly sampling rice cereal & pureed fruits now.  It's a slow process... we're really not much furth...
Continue reading ...

Mon 5/25/2009 8:59 AM

We're 5 whole months old!

We looked at her in awe last night with the notion that it has been 5 months....
 
Not much has changed with her feeding habits... sometimes she feels like it, but usually not....  I'm working with her at home on the things started in therapy.  We play with teething toys and such... anything for a positive oral experience!
 
She was apparently fertilized for the spring, because she is growing like a weed!  She seriously feels heavier to me every d...

Continue reading ...

Wednesday 5/13/2009 1:32 AM

We've got a weight gain!

Well we weighed in at a whopping 10 lbs, 12oz.  Her hydration is better, although it remains a constant struggle.  I it seems to be late afternoon that i start to notice her diapers are drier and she is lacking of fluid.  Her doctor said she can have small amounts of pedialyte every day if she needs it to stay hydrated. 
 
We are starting the intense feeding program on this thursday in Traverse City.  The first visit is an evaluation where the...
Continue reading ...

Monday, 5/11/2009 12:41 AM

Well, my little princess was kind enough to give me a good morning, happy mother’s day present of 3 this morning: pee, poop, & puke… ahhh the start of a great day!  She’s doing about the same…. It’s a constant struggle to keep enough fluid down her.  We go back to the dr tomorrow for our weekly check, so I will send out an update from that aspect tomorrow night. 

 

We had our first pass the baby around at a restaurant last night.  Denny took everybody ...

Continue reading ...

Monday 5/4/2009 6:44 AM

My apologies on the absence of a recent update..... life got very hectic very quickly!
 
Caylee was discharged from Nationwide in Columbus last monday, 4/27.  She and I spent the remainder of the week with my family in Toledo (Which was wonderful), and just returned back to Gaylord this weekend.  I have a month's worth of unpaid bills, a dirty house, & some massive planning to do for the little one. 
 
Her G tube feedings have been going ok... I think the reflux part of i...
Continue reading ...

Caylee was discharged from the OSU Childrens's Hospital this afternoon.  Tiffany and Caylee are in Toledo for a few days, visiting with friends and family, going to have pictures taken by the AMAZING Emily Smith and then I am going to take her home on Friday and stay for the weekend.  The internet was down at the hospital and Tiffany was unable to send any emails.  She will try to get out an update in the next day or so, and as soon as that happens, I will post here.  For now, let's all just ...
Continue reading ...

Thurs, 4/23/2009 11:02 PM

She had a dose of Morphine at 9pm... it took about 5 min before she calmed down.  She seemed uncomfortable when we got back from dinner.  She was not hysterical, but i asked for her to get something before she got there.  She's feeling very binkie dependant but that's ok, she can have it.  She tends to kick her legs to try to move the princess bubbles out the bottom end, and she was irritating the site as she was doing that.  Once she cries she irritates it further.  ...
Continue reading ...

Thurs, 4/23/2009 12:44 AM
1,2,3,4,5,6... Unbelievable!

So she had to have an IV put in tonight before the procedure tomorrow at 11 am.  First 4 sticks were nurses... all misses.  5th was the attending physician- hit but it blew before they could flush.  I was getting very angry as Caylee was absolutely exhausted by this point.  They finally called for a nurse practitioner from the acute NICU that does IV's every day.  She hit on first try.  The nurses were upset that the NP's made them look stu...
Continue reading ...

Tuesday, 4/21/2009 1:41 AM

So we have a new room... Caylee & I.... it's bigger, with a window, a big window.  We have the most beautiful view of the roof & parallel staircase, BUT, with a window!  I'm excited for the toilet too, but most for the natural daylight.
 
We are still on for placement of the G tube on Thursday.  I still don't know what time though... Her reflux is actually getting stronger, which they said would happen.  Her muscles are gaining strength each time she uses them to reflu...
Continue reading ...

Sunday, April 19, 2009 8:26 AM

So progress is slow, but Caylee is definitely making it!  She is consistently tolerating far more than she was when we got here, just not nearly enough to fully feed orally.  She is having generally one really good feed per day, a couple of ok feeds, and a couple of poor feeds.  That is pretty inconsistent, but she is not flat out refusing at every feeding anymore, which is a huge step in the right direction.  This is going to be a long road, but i know she will ...

Continue reading ...

So the G tube process is rolling.  She has just not made enough improvement to show that she will be there in a reasonable amount of time for us to stay in the hospital and keep working on it.  Dr J feels if she had gotten to him even 4 weeks ago, she would be fully nipple feeding.  We lost a precious 3 weeks of nipple feeding by going with the NJ tube.  It's not something this hospital would have done.  BUT... shoulda, woulda, coulda!  That doesn't do us any good now. 
 
She is scheduled for ...
Continue reading ...

Wednesday, April 15, 2009 2:26 AM
We Hadz a bad day!

 

Today went terrible... I'll be frank.
 
Over the course of the day she took a total of 42ml (almost 1 1/2 oz).  She actually napped for a total of 90 min, which was in my arms in the chair with me napping too.... Only sleep I got too.
 
Dr J came in during the 9 am feed and asked if he could try.  He sat her upright just like during the study.  The nipple barely touched her lips and she's gagging.  He says she's not choking, that's a learne...

Continue reading ...

Monday, April 13, 2009 2:48 AM

Caylee w/the Easter Bunny!

 

So would you believe the "easter bunny" went from room to room to visit every child in this hospital... how sweet.  I saw it on the hospital TV channel that he would here.... Caylee and i took a snooze in the recliner this morning & when we woke up there was a gift bag on the couch.... the nurse said it was from the Easter Bunny.... We missed the Easter Bunny!!! The nurse made a couple of calls for me and they were able to stop back...

Continue reading ...

Sunday, April 12, 2009  1:05am

Wow... as they day has gone on today i have become more & more angry!
 
This started first thing this morning.  a nurse came in and pulled out her NG tube for the day at 9am.  She had received a pump feed of 100ml from 6-7 am.  Needless to say she wasn't hungry yet at 9am, & still sound asleep.  They bring in a full bottle of my himdmilk, and mix her multi vitamin, iron, and BP meds & expect her to want to nipple it.  She's gagging and not having it OBVIOUSLY.  S...

Continue reading ...

Thursday, April 9, 2009  10:23pm

 

Baby had a big day today....
 
Her upper GI was pretty much the same as the last 2... normal with reflux.  She got a total of one ounce of barium this time for the small bowel follow through.  She was refluxing by 5ml.  It took about 2 hours from mouth to bowel- they took pictures every 30 min for 2 hrs.  She had a hard time with the fasting.... 3 hrs before and until they completed the follow through. 
 
MRI at 8 pm this evening.  Needed to fast 4 hrs befo...

Continue reading ...

Well, in case anyone hasn't been in the loop... here is a quick summary of the past week....

 

Though uncomfortable with the NJ tube, Caylee continued to gain weight.  She weighed in at 9.0 lbs last Monday, 3/30.  She seemed to be constantly gagging and vomiting anything she did take by mouth.  Sunday morning 4/5, she pulled out her NJ tube during a battle between baby & mama to suction the reflux out of her nose; baby won...  We went to the ER... Although Caylee's new pediatrician said he ...

Continue reading ...

First of all, let me apologize for the lack of posts on here lately.  With Caylee being home, Tiffany has her hands full and doesn’t get out the updates like she used to.  Which I guess is a good thing – when I don’t hear anything, that means everything must be OK!

Sunday, April 5, 2009:

I find out that while Tiffany was trying to clean out Caylee’s nose, she [Caylee] pulled the feeding tube out.  Our mom was headed up for a visit and they were waiting it out to see if Tiffany could...

Continue reading ...

Thursday, March 26, 2009 11:24 PM
Subject: We're Home!!

 

So we finally busted Caylee out... late monday afternoon going into evening.  We got home monday night, and brian went right back to work at 5 am tuesday morning.  It's been challanging, but possible.  She's home on an NJ feeding tube.  We have a pump hooked up to her for 20 hours per day.  There is a medical supply company that leases us the pump, ships the needed supplies, and her formula containing small bits of gold ( I figure it ha...

Continue reading ...

Monday, March 23, 2009   3:51 pm:

I'm on my way home with my mommy & daddy!  I can't wait to see my new room! I'm resting up in the car! Thanks for your thoughts & prayers to get me home... xoxo Caylee Grace.

Continue reading ...

Sunday, March 22, 2009 12:17 AM

Baby Steps Baby Steps!!  I would never have imagined how thrilled I could be with such a baby step. 
 
She nippled Pedialyte today 3 times, 5cc, 7cc, 10cc, & kept them all down.  Because it contains no proteins or fats, the stomach can process it very quickly & pass it.  It's small, but it's a step in the right direction... The objective is to get her nippling something... without a negative response from her body for her to associate with oral feeding.   We're...

Continue reading ...

Thursday, March 19, 2009 10:25 PM

Does one doctor ever talk to another??
 
Caylee had blood work drawn this afternoon by the nephrologists looking for tolerance to her captopril (BP Med).  Doc came in a couple of hours later and said that her potassium level was concerningly high, a side effect of the medication.  High potassium can cause her serious cardiac issues.  As a plan, she was to receive Lasix to help her pee out the potassium, & the medication was being switched to Dynacirc, another BP...

Continue reading ...

Thursday, March 19, 2009 12:18 AM

Two Miles back.... Seriously?!

 

And the plot thickens.... again.  It seems that Caylee has now contracted some sort of a virus from being in the hospital for so long.  Yellow vomit even though she hasn't eaten, low grade fever, & 120 grams of liquid poo-- that's a quarter pounder!  She started vomiting yesterday.... & it got progressively worse overnight & today.  She has not been lethargic, but has not been awake and alert at all.  She slept most of the ...

Continue reading ...

Tuesday, March 17, 2009

 

Tiffany sent a text out at approx 10:30 am stating that Caylee went back downhill and they had to put the feeding tube back in at 4am (she had been without the tube since Friday) and that the doctors were trying to come up with a plan and she would send an update later, as she was just not in the mood to talk to anyone.

 

Email from Tiffany at 10:37 PM:

 

What a shitty day!
 
Yesterday morning she had lost 55 grams (almost 2 oz).  To compensate, they increased th...

Continue reading ...

Sunday, March 15

If we really would have pushed, we probably could have got today, but it looks like tomorrow is the big Day!  Her VCUG is scheduled for tomorrow (requested morning, but time not set till day of) so assuming all remains the same we will be making the road trip home with the baby!!
 
Her BP is not as low as they would like, so they increased the dose again yesterday.  She left Munson at .3mg, she was increased to 1mg yesterday.  She doesn't mind that medication though, it tasts...

Continue reading ...

Friday, March 13, 2009 – 12:37am

So 3/4 of Caylee's anticipated tests are completed...
 
3/11- Scope- appeared to the naked eye to be normal.  No erosion or inflammation of the esophagus, but they said before hand that they probably wouldn't find any since she has been on acid reducers.  A couple of tissue samples were taken and sent out to look for microscopic inflammation & those results will be back tomorrow.  She did much better than i thought i would with the 5 hr fast before hand.  S...

Continue reading ...

Wednesday, March 11, 5:34am:

So here we are....
She is finally sleeping soundly in her new room in her car seat next to her new bed.... Sorry i didn't call anybody- She has fussed for nearly the last 6 hrs straight.
 
The actual transfer went very smooth- She did very well in her car seat strapped to a stretcher, so she sat upright the whole way.  We are on the 7th floor, & she has a window!  She is mesmerized by looking outside!  DeVos is HUGE... I though Munson was a maze...
 
I am actually not ...

Continue reading ...

Sunday, 3/8/09

Well we have a plan.....
Dr Sciamanna called me in my room this morning (He got to me before i got to him) to let me know he felt is was time for a transfer, but they couldn't do anything on a sunday.  Her blood pressure does not seem to be responding as well as they would like to the medication, and they are about maxed out on the dose of that.  There is a pediatric nephrologist there that she would have had to see as an outpatient anyway if we went home from TC... this way it w...
Continue reading ...

Ok....
She just took her entire noon feeding by bottle.... it took her 50 min which is kind of long, but i had a hard time burping her.... we took 2 10 min breaks in the middle to get the air out, but it seemed to make the rest of the feeding more comfortable for her.... i think that was her issue last night.
 
She did not do great overnight either- same feeding story.  Doc increased her Prevacid dose this morning to the max dose.  We need to give it till sunday to determine if it will work for ...
Continue reading ...

Well she was 10 weeks yesterday, so I would have to go back to work today…. So thank God for layoffs! 
She has taken feedings by mouth today better than she has in a week.  She hasn’t finished them all, but that is because she is just too tired, not because she is having pain.  She is still crying a couple of times after a reflux, but nothing like she was.  HOPEFULLY…. This is working and we are on the road out of here.  She slept through her 6pm feeding to recoup some energy.
 
9pm did n...

Continue reading ...

So she had an upper GI at noon today.  She did really really well, she didn't cry once.  She had strawberry flavored barium mixed with breast milk and she took it like a champ and wanted more.  They sat her in a special car seat apparatus with blankets around her.  The speech therapist fed her the bottle and she took it with no problems.  There was nothing anatomically wrong.  The swallow process looked pretty good, nothing was going into her airway or anything like that.  They noted that her...
Continue reading ...

Sunday, March 1, 2009:

Well i wish i had better news tonight but i don't.....
 
Her reflux is not any better, and due to her behavior, i think her esophagitis is worse. 
She is not sleeping in her crib at all, they have her upright in a vibrating bouncy which seems to comfort her a bit. 
She is refusing feedings, but is so hungry at the same time, it's heartbreaking.
Her nurse recommended a warm bath this afternoon in the midst of her discomfort, and it did seem to calm her a bit.  She took a pre...
Continue reading ...

So yesterday was such a good day, there was bound to be another hang up today......
 
Caylee continued to nipple all her feedings throughout the night.  her nurse that came on at 7 am made an error..... the last time she took care of Caylee she was getting fortifiers added to her breast milk, so she added them and gave her a bottle at 9 am.  Well the fortifiers are a huge aggravation to the acid reflux.  She did ok for about half of that feeding then it was over.  I arrived at 11 am and she was...
Continue reading ...

Wed, Feb 25, 2009

Mom's Theory....

I have a theory on the reflux.....
 
At 6 pm she just took her whole feeding by bottle with minimal fussing, similiar to 3 am.  Every other time was terrible.  Then it occured to me that both of those feedings i had pumped about an hour before that and left her fresh milk out instead of refrigerating it and warming it. (breastmilk is good at room temperature after pump for up to 10 hours)
 
i think it may be more comfortable for her to have cooler milk.  She wa...

Continue reading ...

 I don't want to speak too soon, but it could be one step forward today....
 
Dr Sciamanna came to see Caylee this morning.  The nurses explained the severity of her reflux and the discomfort going along with that.  He said her esophagus has likely had some erosion from the acid.  Each time she refluxes it burns her throat like fire.... Generally it's 5-10 times per feeding, and continues as her belly empties. 
 
He took her off the Zantac because it doesn't seem to be helping enough.  He starte...

Continue reading ...

Here is the latest update on Caylee. Things are better in some areas and not so much in other areas.  The posts I have been putting here come directly from Tiffany. 

February 23, 2009
 We are due today!! We are officially Full Term! Happy supposed to be Birthday Kiddo!
 
Not a whole lot has changed....
 
Her blood work and urine cultures came back with no sign of infection.  Her IV was taken out yesterday, and she is continuing on oral amoxicillin 1x per day as a preventative- she will go home on ...

Continue reading ...

News on the Caylee front. Not really good news. She is still in the hospital and are not sure when she will get to come home.  Below I have posted the news that Tiffany shared.  Please bare with me, it is quite lengthy, but in order to completely understand what’s going on, you need to have all the facts:


February 16, 2009
    Caylee is doing a wee bit better this morning- she took all of her noon feeding by mouth for me.  She is taking 45 CC now- exactly 1.5 oz.  That is the first full feedi...

Continue reading ...

Hello all.  Once again, I am very sorry for not updating this in a while. Things have been crazy!  Things are doing great with the baby and hopefully, within the next week, she should get to go home!

The weekend of January 30, Tom and I went for a visit and had a chance to spend some time with Tiffany and the baby.  Amber stayed with Tiffany overnight in Traverse City and got to spend lots of time with the baby. She helped give Caylee a bath and (shhhhh!) was even able to hold her for a little...

Continue reading ...

First of all, let me say I'm sorry for not posting on this thing for a while.  I haven't forgotten, I've just been so busy, I just haven't had a chance.  Things have been so crazy.  Let me see if I can sum it up.

First of all, the baby is doing fabulous!  She weighs in about 4lbs, 7oz and she has been taken out of the incubator and put into a crib.  Everything is going very well with that, she is doing great at maintaining her own body temperature - which is one of the biggest things she needs...

Continue reading ...

FABULOUS NEWS!!!  This was written by my sister (Tiffany/aka mommy) herself:

How adorable, she opened her eyes for me today!  I swear she smiled too, although i'm sure she's just figuring out she has muscles in her face!

Her nurse was 5 min late for her milk today and she let us know it!  She was just miss sass just a fussing until she got that milk!  She settled right down as soon as it started going in her belly!  She took a 13 ml feeding today!  They will keep upping 1 ml at a time until sh...

Continue reading ...

I had to share some more photo's:


Tell me she is not the sweetest thing you've ever seen!!!!!!

At least in these photo's, you can see her face!!!

And last but not least, the proud mommy holding baby!!!!!

Tiff says she fell asleep like that...  on her chest...

Continue reading ...

Hello all..  I would like to share some fantasic news...  and ask for your prayers...

My sister, Tiffany, who was 6-1/2 months pregnant at our wedding...
(here she is with her husband, Brian)

had some complications in that pregnancy and had to deliver the baby 2 months early.  Little baby girl Caylee Grace Turbin was born on Tuesday, December 23, 2008 weighing 3 pounds exactly and measuring 14 ½ inches.  Both mommy and baby are doing great.

 

Caylee was born “kicking and screaming” as Bri...

Continue reading ...