Been awhile!

Charlotte has finally decided that oral feeds are worth dealing with and has not been tube fed for over 24 hours now. (nearly 36 hours, actually!) We are still using the Haberman bottle and are hoping to be able to get her to use a regular bottle. We’ve tried several different regular bottles but she just can’t quite get used to them yet. The best luck has been with the Munchkin Tri-Flow and we may try that one again soon. She also liked the Dr. Brown bottle but was unable to get anything out of the bottle. We may try the Y nipple with the Dr. Brown bottle if the Tri-Flow doesn’t work. We’re just happy she hasn’t had to have anything via tube the past day and a half and are certainly praying for this to continue so we can get rid of the Mic-Key button and just have our sweet little Charlotte without any medical intervention stuff attached to her!

Day 4 Post Op

Charlotte is doing much better today. We had to give her formula yesterday b/c mom needed a break and went out for a little bit. She promptly vomited the formula up at 6p so apparently she’s been spoiled by the good stuff and knows when she’s being cheated out of it!

Trying to nurse but it’s not going too well just yet. You can follow our journey in that department here: http://breastfeedingcharlotte.wordpress.com/ I think that once we get both surgeries well behind us and Charlotte is completely med free, things will go much better. She even refused a bottle this morning so it’s not just the breastfeeding she’s refusing. It’s everything. I imagine she’s still in a bit of pain and it’s all so new to her.

She’s just FINE! :-)

Cranio-facial (CF) says that it’s not a fistula. CF was impressed with how well she was already healed and how well she was breathing while on her back. What I felt/saw is where they took tissue from to help close her palate. He said that should start to regenerate and grow here pretty shortly. He also encouraged me to call about any other questions and was happy that I had brought her in even though there wasn’t anything wrong -said that it’s better to make an unnecessary visit to make sure everything is ok than to have something wrong and not have her seen at all. I LOVE our CF guy!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Oh, and PS…. she nursed again this afternoon – for about 45 seconds. YAY!!!!!!!!!

-lauren

Back to Atlanta: Fistula on entire left side!

This morning I discovered that Charlotte’s entire left side of her palate had re-opened. Upon calling the crano-facial clinic, we were instructed to bring her back in and she has an appt at 2p today. I’ll be taking her and plan on packing everything I need for a potential hospital stay (ie, putting everything we had with us already in the truck) just in case they decide to re-admit her to correct it. Hopefully that won’t be the case but better to be prepared than surprised. I will update as I can.

Other than this issue, Charlotte is doing just fine and was actually awake and smiling when I went to feed her this morning.

Home from surgery!

The following is the update I posted to my ivillage boards. A more detailed post will follow once I’ve had some sleep and am able to better organize my thoughts.

We’re home after Cleft repair. And last night in the hospital was HORRIBLE. They kept coming in to give her meds, I’d get her calmed down, and then when i’d be ready to be go to sleep, she’d wake up and then no more sleep for mama. Plus there was a HORRIBLE storm last night in ATL that kept me awake as well. I even pumped at 2am for lack of anything better to do and fear that as soon as i drifted off she’d wake up so what was the point?!?!? LOL.

Things went much better than anticipated and other than not being able to use the paci for 3wks, we’re hoping the worst of it is behind us. She has to have the no-no arm bands on for 5 days and follows up with cranio facial in 2wks. I am EXHAUSTED b/c I only had 2hours of sleep going into the surgery so i’m running on maybe 4hours of sleep total for the past 48hours. (so if i said something that didn’t make sense, please forgive me!) We’re gonna turn the no-no’s into artwork. DH is going to get some permanent markers today and we’re all gonna sit down at the table (2yo daughter included) and colour on them. I think Charlotte might enjoy them slightly more if they’re decorated! LOL Plus it’ll help Alli feel involved in what’s going on.

I tried to BF last night to soothe her but she didn’t want anything to do with it. We will probably tube feed her today and tomorrow and then try to start on oral feeds tomorrow night and see how they go from there. I don’t want to push it too hard b/c she can be extremely uncooperative if she’s feeling even the slightest bit off and i can only imagine how off she’s feeling right now.

thanks for all your prayers and kind thoughts – i certainly felt them yesterday as i was extremely calm and able to keep my wits about me as opposed to during her jaw distraction surgery. Course I also didn’t just give birth to her 9 days ago either.

Ok, i’m rambling so i’m going to stop now, go pump, and go to SLEEP!

thanks again and i will keep everyone updated as i can!

Last breastmilk almost gone….

Charlotte’s last bit of breastmilk before surgery is almost done. And it’s just a few minutes past the deadline. She’ll be getting about 3oz of pedialyte around 8am then that will be the last of the fluids until she gets the all clear for fluids to be restarted post-op. Not looking forward to the drive to ATL but maybe I’ll get at least another hour of sleep. Managed to FINALLY fall asleep around 215a earlier this morning. Starting to get a little nervous but what normal parent wouldn’t!??! Thank you to everyone who’s reading this site for your thoughts and prayers through all of this. They are what have kept us strong! Please keep them coming today especially!

Surgery Day is here!

And of course I can’t sleep. I am WIDE awake! It’s nearly 145 am and I have to wake up at 430am to pump and get Charlotte her last (and MOST IMPORTANT) dose of breastmilk prior to surgery before the deadline of 640a. She can have pedialyte until 840am then no more fluids until after surgery.

 Surgery is scheduled for 1240p.m. today and we will be phoning close relatives with results and hopefully posting here as soon as we possibly can. I (lauren, mom) will be spending the night at the hospital with Charlotte. We have been told that as soon as she can tolerate feeds, she’ll be able to go home. And of course being that she has  a g-tube, all she has to do is keep it down and we *should* be good to go. We’re hoping that means we’ll be home Tuesday evening barring any unforseen complications or change in plan.

Please keep all of us in your thoughts and prayers. It’s hard to believe that in less than 12 hours, our amazing little daughter who has taught us more about endurance and strength in these past 5 months than anything prior to this, will have her palate! What an amazing world we live in and how fortunate we are to live in this time where we have access to the technology to fix what her issues!

Gearing Up…

Quick Update – Overall Charlotte has been doing pretty well. She is a well-adjusted baby who is meeting all of the normal milestones. She seems to want to giggle, will coo, plays with her bouncy chair toys like there’s no tomorrow, LOVES her mobile, and is just a very very very HAPPY little girl which is amazing considering all that she’s been through. She’s been doing better with bottles – still on a cycle where she takes bottles GREAT for a couple of days then decides she wants nothing to do with them and we tube feed her. But she’s sleeping for nearly 8hours straight at night now which is NICE and has made life much easier for us.

August is going to be a rough month – tomorrow is her three month eval with early intervention. Then august 8th is the pre-op with cranio-facial and sleep study in Atlanta. The 21st is cleft repair then the 29th will be ear tubes and her PEG tube will be changed to a MIC-key button. (A MIC-key button lays flat against the stomach as opposed to the PEG tube which is actually a long tube that comes out of her stomach). Ear tubes will be placed to help prevent build-up of fluid and ear infections which kids with clefts have more risk of experiencing than normal kids. We will certainly do our best to keep things updated as we can but next month it all changes again and HOPEFULLY things will go well and we’ll be able to get her breastfeeding so Lauren can quit pumping! (that’d be a milestone!)

So more updates to come in the near future as the ball starts rolling towards more surgeries and more changes – for the better!

Distractor Pins out & Repair Date!

Chris took Charlotte to Atlanta today for distractor pin removal. He had taken her a couple of weeks ago but we were told they needed to stay in for just a little bit longer. They were removed today and a surgery date was set for repair of the soft and hard palate. This will hopefully occur on August 21st. I say hopefully because we have to coordinate things with the ENT (ears nose throat) doc for tubes in her ears to avoid fluid build up and with the GI (gastro-intestinal) doc for a MIC-key button placement. So depending on their schedules, things might change date wise but at least we're heading towards repair and seemingly it will be done this summer which is wonderful news for us to hear!

Charlotte’s weight update!

Last monday she was at 7lbs 12 oz. The goal is for her to gain at least an ounce a day. Her weight today was 8lbs 7 oz! She'd gained nearly 11 oz in just seven days! YAY Charlotte and YAY for expressed breastmilk! it really does do a body good!