amber-and-tom

Update January 2010

Wed, 13 Jan 2010 00:06:07 +0100

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 same can’t happen for Caylee?

October 2009 Pictures

Wed, 18 Nov 2009 01:11:44 +0100

Latest Caylee News

Mon, 22 Jun 2009 00:49:16 +0100

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 further along than we were 3 months ago.... but at least she's at home :) We spend tuesdays and thursdays in traverse city for intense feeding therapy. she does just fabulous in the car... passes right out just like her daddy.

Caylee is a Baby Einstein baby! Those little eyes stick to those puppets like glue (or dried baby poop as the case may be)

She loves the fish tanks... she will stay entertained for a half hour sometimes!

xoxo, Caylee

Tiffany Turbin :)

Sunday, June 21, 2009

Caylee had her pictures taken by the lovely, talented Emily Smith from Smith Gallery Photography (same photographer as Auntie Amber and Uncle Tommy's wedding pictures) and a sneak peak:

We're 5 Months Old & Well Baby!!

Tue, 26 May 2009 23:38:25 +0100

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 day. With her great weight gain, we should clock in tomorrow around 11 lbs, 12 oz.

Developmentally she is amazing me every day. She takes toys in her hands now. She is constantly trying to eat her bibs now too. That little tongue is very busy... till it makes contact with milk, in which case it's apparently excruciating!

There are several people i haven't called back... forgive me, I am awfully run down with a head cold at the moment....

I'm still working on a trip down to Toledo... just going to have to push it back a couple of weeks :)

Tiffany Turbin :)

Tue 5/26/2009 5:24 PM

Well Baby!

We've had our first official well baby check up. We are doing just fabulous at a pudgy 11 lbs, 12 oz. We have rolls... everywhere!

For her corrected age of 3 months, she is in the 50th percentile for weight, 25th percentile for length of 22 1/4 in, & 50th percentile for head circumference.

She was very upset that she got poked... 3 times! But luckily she forgives quickly. I gave her some Tylenol just before the shots... she's sleeping soundly right now and i will just have to baby her tonight i guess... ah... those pudgy little legs are sore!

Tiffany Turbin :)

2 New Updates!

Fri, 15 May 2009 21:32:22 +0100

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 they will determine a course of action for Caylee's specific needs. Hopefully we will get somewhere here because her overall feeding skills have not improved much yet.

Everything else is pretty much the same. She continues to reflux & vomit pretty regularly. I'm getting pretty good at knowing when it's coming and being able to catch it. last night she had an explosive poo.... during the diaper change she pukes. As i'm going for the puke, she plants her foot into the dirty diaper and rubs her other leg with the dirty foot.... she landed herself in the tub! She had so much fun in the tub it was amazing. She was splashing me and pushing water right out the side with her little thunder thighs! When she woke up this morning she was more playful than ever before. She's sharp as a little tack, she misses nothing, & has a lot to say about it!

Tiffany Turbin :)

These pictures are from the stop off in Toledo:

This is our mother's Aunt:

Fri 5/15/2009 12:57 AM

It's feeding therapy for Caylee!

We started the Intense Feeding Therapy program at Munson today. We are meeting with an Occupational Therapist (OT) named Patty, & I did like her. She wants to see Caylee every Tuesday & Thursday for one hour sessions until at least September. It's a behavior management now that's going to take time but will be done. She assured me that even if Caylee never takes a bottle, it doesn't mean that she won't progress beautify to solid foods. Depending on what route she takes over time, they will work with her to maximize her chances of orally feeding & enjoying healthy foods. There is a Nutritionist that is a part of the program.... along with a speech therapist, social worker, & oh yeah, the base of that pyramid... reception!

Of course i'm the MVP here going up to bat for Caylee. The bulk of the time will be spent training me to ensure her success with long term feeding progression. Maybe i should have taken this program for me....

For the next 2 weeks she only had openings once per week, so i am going to try to get us back to Toledo to spend a few more days with my family while we have the chance.... not to say that she couldn't miss a session.

She did so wonderful in the car too... They are timed around her usual nap times so it works out beautifully. She seems to get good sleep in the car too.

Excited for progress!

Tiffany

Happy Mudder's Day Mama!

Wed, 13 May 2009 02:04:06 +0100

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 do Benethum’s on account of mother’s day. She wore her cute little pink velvet dress & played her cuteness card. Today she went to Grandma & Grandpa Turbin’s house for the first time. She was Busy! Birds, dogs, cats, & not to leave out the ponies…. I had to convince her grandmother that she is just too small yet to get up on that horse!

Her oral feeds may be improving slightly….. I don’t want to jinx us of course, but she has seemed to be a little more interested the past couple of days. It’s still very little volume, but it seems to be rising in quality a bit. There’s a catch 22 here with this little peanut- In order to really work on oral feeding, she has to be hungry…. In order for her to be hungry hungry…. Her belly has to empty out completely, which lowers the amount of fluid she takes in within a day. We should be starting feeding therapy in Traverse City late this week.

Happy Mom’s Day to all the Moms. Thanks for all the thoughts of me today! Caylee mailed me a card… funny she wrote her return address & everything…. Aunt Amber sent me tulips!! And… Caylee & I got lots of messages, texts, and cards. Thanks to everyone!

Check for another update tomorrow night after her doctor’s appt.

Couple cute videos.....

http://s656.photobucket.com/albums/uu290/tiffanymsu/?action=view&current=100_0001.flv

http://s656.photobucket.com/albums/uu290/tiffanymsu/?action=view&current=100_0013.flv

8:26 pm

Great weight gain! We are 10lbs 12oz and full of sass!
Tiffany :)

WE ARE HOME [again!]

Tue, 05 May 2009 02:30:20 +0100

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 it has actually gotten worse since the tube placement, which they said may happen. They have taken a muscle (the stomach) which naturally moves and contracts in order to empty, and pinned it to the wall of her abdomen. By losing that ability to move naturally, the vomiting has worsened. I've been trying to re-feed what she looses, but she's losing a lot!

I've been doing some trial and error with her feeds to try to see what will work best for her. Thickened feeds seem to help a bit, but she still tosses those cookies. Continuous feeds overnight will ensure volume getting in to her, but using the pump means the milk cannot be thickened, so she refluxes overnight and tosses her cookies that way.....

I'm up right now becuase she decided that 5 am was a good time to poo... which caused her to reflux, which sent her into a vomiting episode.... Got her cleaned up, calmed down and back to sleep. Now we try feeding again!

We see the doctor today... i think her weight is up, but we'll see. The biggest challenge here is keeping her hydrated when she vomits everything that goes in.

I will send out again tonight... with her weight & BP... With any luck, both will be great!

Tiffany Turbin :)

-----------------------
here are a couple of pics that I (Amber) took this past weekend during my visit

--------------------------------
Monday 5/4/2009 10:16 PM

We weighed in at 10 lbs even.... that's a 4 oz gain from one week ago today. That's about half of what she should be gaining, but it is a gain. She is slightly dehydrated... enough for concern but not hospitalization. I have until thursday to attempt to keep more fluids down her & I have to get back with her doctor.

We will of course continue to work on oral feeding, but i feel it's most important to concentrate more on keeping her nourished & hydrated.

She puked real good for daddy tonight.... Good shot Caylee!

Tiffany Turbin :)

Released from OSU Hospital

Tue, 28 Apr 2009 01:58:11 +0100

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 be thankful that she's been released! Thanks to everyone for the thoughts and prayers that brought her to this point. Please don't stop, there is still a long road ahead...

She's Resting Comfortably???

Sat, 25 Apr 2009 02:55:29 +0100

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. She seems to be comfortable with the Morphine (not a big dose for her size, just takes the edge off) & Tylenol. She can have a dose of Morphine every 4 hours throughout the night if she needs it. I think she is starting to feel a bit hungry too.

GI Doc will be back in the morning to check the site & give the ok to feed. If all goes according to plan, we will be discharged on Monday. Just spending the weekend recovering. Tomorrow will be the fun day. The entire day is devoted to Caylee, so i will try to get out another update once she is sleeping tomorrow night.

So far so good, thanks for all the thoughts and prayers.

Tiffany Turbin :)

Fri 4/24/2009 9:30 PM
She's not so comfortable anymore.... The surgeon came in this afternoon during the one hour window out of the entire day that we left the hospital. He adjusted the tube placement and she just lost it! Her nurse came in after the fact, got her some Tylenol and snuggled her. She hadn't calmed down at all after 25 min, so she got her some morphine. Logic tells me... you're about to hurt the kid, give her some tylenol first and she may not even need the morphine... but hey, i'm just mom.....

She calmed after the morphine, slept for nearly 2 hours then it really started. She was trying to pass some princess bubbles and working on a poo.... This was during a feeding, so she was pushing all her milk back up the open tube. There was over 1oz more in her belly than she had been fed- lots of residual from the last feed that wasn't moving yet. (expected since she went so long without food before the procedure) She screamed herself exhausted, continued to push non-stop for nearly an hour with a constant whimper that was all she had left in her. Her heart rate was through the roof at 255, her nurse was trying to get help from the nurse practitioner, who would be in soon.... So Brian went hunting. The nurse was outside another room waiting looking pretty angry herself. Brian asked if she was coming... The nurse responded for the NP "soon"... So Brian very loudly asked who was next in charge. EEhhhh.... She was in the room within 2 min & ordered her another dose of morphine. She started calming down within 5 min... but it took nearly 15 for her to let go of the pushing (that was aggravating the site more) The doc said it feels similar to a C-Section, being that they cut through skin & muscle. Poor Boo....

She's finally sleeping now... she has 2 nurses tonight, same from last night. They got the doctor to change the order to morphine as needed, every 2 hours instead of 4. Problem is narcotics constipate too... 6 of one, half doz.....

We were expecting this to happen so it's not too surprising, just still sucks. She's getting another feed right now while she's nice & relaxed, so we'll see how she tolerates it.

Check back tomorrow!

Tiffany Turbin :)

------------
Tiffany just sent me (Amber) a message that Caylee has a fever of 101. They have stripped her down and waiting an hour to re take it. Her heart rate is way too high for sleeping, & she's whimpering again. Too tired to cry. There are drugs on standby, she's not going to be uncomfortable tonight! Tiffany said they believe it's that high from her getting so worked up. And 101 isn't as much of a concern in infants as it is in adults...

-------------

G-Tube Placement

Thu, 23 Apr 2009 21:43:36 +0100

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 stupid... Forget about the pin cushion baby.... Somehow Brian managed to snore through the first 2 misses... pretty impressive actually :)

Needless to say she's sleeping now... She is finishing her last feed right now then it's only IV fluids for the next 36 hours, then they will try pedialyte through the tube. If she handles that well she will get a milk feed and if that goes well she will be back to a regular feeding schedule.

It is a teaching procedure, so there will be lots of observers in the room. Since we moved to the new room, they will come to her... she will not have to be taken anywhere. The whole thing takes about 1 hour- 45 min to set up, 5 min to place, and 10 min to clean up. She will be consciously sedated, so she will get valium & fentanol. She will get IV morphine when they are finished. She will be groggy for about 6-8 hrs after, then they manage pain by her signs & signals. They assure me she will not be in pain. Recovery after the initial 24 hours is pretty quick... we are expecting to be discharged on Monday.

Let everybody know tomorrow how she did... Don't worry.... no news is good news.... Caylee will be fine- for everything she went through for that IV she better get some damn good drugs!

Tiffany Turbin :)

Thurs, 4/23/2009 1:38 PM
All is over, All is well...

Well they finished at about noon- they got started around 10 30... It took a little longer to sedate her & keep her sedated than planned. Doctor came out and said to remember for in the future that she has a high tolerance to narcotics! Once she was completely out, it went really quickly and easily.

She's sleeping now.... probably for most of the afternoon. I think i would really like to do the same after last night! Once the IV was in and we finally fell asleep- beep beep beep... her IV must be manually reset every 60 min, so it has to alarm for a nurse to know to come reset it, & she'll be in when she gets a chance.

She got a tylenol suppository before they started this morning to give her a kick start for pain management. Tomorrow is going to be the hard day from what they're telling me. I think she deserves Morphine after all that!

Right now the tube is "vented" meaning the end of the tube is left open to allow any air to escape and keep her belly from becoming distended. Tomorrow morning they will come turn the tube (like a new earring) & try pedialyte, and depending on that they will try milk. She is on high IV fluids with electrolytes now to prevent dehydration.

I'll try to update again later tonight with how her recovery is going. So far so good....

Tiffany Turbin :)