Thursday, February 27, 2014

1 year old and thriving...

Once again, it's been way too long since I've written.  I think we were a few weeks post-op when I wrote last.  It took about a good three weeks total for Charlee to finally return to normal sleeping patterns.  Although, she was still waking up at least once a night, expecting to be craddled back to sleep.  We were guilty of that for sure.  Since she wasn't taking a bottle anymore, I'd rock her to sleep and then rock her again, if she woke up in the middle of the night.  We finally had to break that cycle and try the cry out method.  It only took a few days of that and she was back to sleeping through the night.  She's such a fast learner!  It's so nice now because I can just kiss her goodnight and lay her down and she puts herself to sleep.  We're going on several weeks of sleeping through the night. SO..hopefully this means it will stay like this (yea right).

I can't believe the surgery is 2 months behind us now.  She's had all her follow up appointments and everything is going well and looking promising.  She's been taking steps for about a month now and is slowly walking more and more each day.  She says "mama, Rocco(the dog), and Ella"...the little girl from daycare.  She still has yet to say "dada", but we're drilling it daily! 

She had her 1st birthday and we threw a big party.  It was a fiesta theme and I think everyone had a good time.  She did great and looked so cute in her tutu.    TJ's parents came down for that, so that was nice to have them here.  She ate a little bit of her cake, mostly icing.  We had a pinata and a bounce house for the kids and beer and wine for the adults. :))

She just had her 1 year check up and is progressing well.  The only concern is that she still isn't drinking...but wouldn't ya know that she finally sucked through a straw last night, after her appointment.  So, maybe this will be the start of her drinking.  Now, I need to go buy a few cups with straws.  She's also eating like a piglet!  She loves eggs and yogurt.  She'll eat cut up veggies and fruit, french toast sticks, chicken nuggets, mac n cheese, and mashed potatoes.  Hopefully this means she will not be a picky eater, but we'll see.

All in all, we are in an "easy" phase right now.  I feel like in the last year, there's been "easy" times and "hard" times.  Right now, it's easy.  We're in a routine with her and we have a playroom for her now where we spend alot of time.  T.J. and I share the roles and can take her anywhere.  I'm looking forward to Easter with her, and the beach in the summer, and the plane ride we are taing in a week to head back to meet all of TJ's Missouri family.  That should be interesting. 

Thursday, January 2, 2014

2 weeks post surgery

It's been 2 weeks since Charlee's surgery and I'm finally getting a free minute to catch up on my blog...since I'm not using this time to actually sleep!  Something we've been deprived of for 2 weeks now, but before I get into that, let me go back to surgery day...

The night before surgery, everything went as planned.  We woke her up at 11:30 for her last formula bottle, which she drank and went back to sleep.  Then, we woke her up at 4 am to get ready.  She drank her last clear liquid bottle on the way to the hospital.  First time for apple juice was a success.  We picked up TJ's mom on the way and arrived at the hospital by 5:30 am.  We were in admitting and pre op for about 2 hours.  She was amazing...laughing, playing, jumping around.  She definitely kept us calm.  My parents arrived before she went back and everyone got a kick out of her spunk. Around 7:30, it was time for them to take her.  I kissed her and began to cry.  I watched the top of her little head, as she was wheeled down the hall in her crib. A vision I will never forget. I lost it for a few minutes, but sat in the waiting room for 2 1/2 hours relatively calm.  As soon as we saw our surgeon, we jumped up, awaiting her news.  She was all smiles and said everything went great.  Shortly after, a volunteer came to get us to go back to recovery to see Charlee.

I was so nervous to see her, scared of what she would look like.  She was completely out, swollen cheeks, with a little blood dripping out of her mouth.  They had to sedate her when she came out of surgery because she was somewhat hysterical.  So, we all took turns, going back there to see her.  After probably about 30 minutes, she woke up, crying.  The nurse had to check her out before giving her to me.  She was just sobbing, looking at me like how could you do this to me mom?  Finally, I held her and that settled her down.  The hospital was overbooked, so we ended up waiting for about 3 hours just to get a room.  We ended up in PICU and she was given another dose of Morphine as soon as we got up there.  You could tell she was totally out of it.  

By the nighttime, she was beginning to show signs of her old self.  At one point, in the middle of the night, she was actually laughing and scaling the sides of the crib.  I thought: "Is this girl for real?"  I think maybe the morphine was still kicking in.  She drank fluids and slept on and off through the night, with no drops in sats, so we were able to go home the next day.  

Overall, she did really well during the days, but the nights have been a nightmare.  For the first week, we kept her medicated around the clock.  She would be up at all hours of the night,moaning and groaning.  My MIL and myself would take turns during the night, holding her and walking her around the house.  After several days of that, her and I both were physically exhausted.  Even after bad nights, Charlee would be in good spirits during the day.  I believe it was 4 days post op and she was bouncing in her bouncer.  It's amazing to me how well she's done, considering what went on in that little mouth of hers.

I wish I could say that her sleeping habits have improved, but as I'm sitting here on 3 hours of sleep, I can say that's not the case. I have no idea what is keeping me going.  Some nights have been better than others.  She'll only wake 3 times, instead of 5.  There's just no way to tell how it's going to go.  There have been times where I've broke down crying, begging God to make it better.  There's been nights where I've driven her around the neighborhood, just to get her to sleep.  I say it's like having a newborn again, but worse, because she won't take a bottle.  She won't take liquids at all, unless we get a few syringes down her when we're lucky.  That's really the only issue we're having.  She won't take a bottle or a cup.  She hasn't had formula since the hospital.  It's concerning, but as long as she's not dehydrated, I guess it's ok.  I'm assuming her mouth is still sore and a nipple of any kind, irritates it.  I guess when she's ready, she'll drink again.

All in all, the whole experience has been better than we expected.  I dreaded this surgery for so long and can't really believe it's over.  I definitely was not prepared for the weeks after...dealing with no sleep, the on and off crying one minute and laughing the next.  She has no routine right now, so I know that it's going to be hell getting her back into one.  I'm hating it right now, but I know that it'll get better and I just have to hang in there.  That's really all I can do.  I don't want to discredit TJ, because he's helped as much as he could with work.  I can't expect him to stay up all night and go to work the next day.  Although, I go back in 4 days, so I'm hoping Charlee makes a miraculous turn around very quickly. 

My MIL flies in on Saturday to help for a week, so I know that will make things better.  Thank God it's behind us now and we can move on with the hopes that she will heal properly and completely and MAYBE this will be her only surgery.  She will grow and develop normally from here on out and we can just simply ENJOY being parents to her.  I hope and I pray for that.  

Wednesday, December 18, 2013

Twas the night before surgery...

It's finally here.  Our surgery date.  I cannot believe it's been 10 months.  I've known about this surgery for so long, but it always seemed so far away.  Now, it's here and there's no turning back the hands of time.  We are faced with the reality that our daughter will be going under tomorrow for her palate repair. 

I have had my emotional breakdowns, but I'm keeping it together when I need to.  I know I have to be strong for her, especially tomorrow, when they take her away from us and into the operating room.  That is the part I'm dreading the most because if she's screaming for me, it'll break my heart.  I'm also dreading her in recovery, right after surgery.  She was extremely irritable when she had her ear tubes put in and that was only a 10 minute procedure.  I'm hoping she will be pretty out of it all day tomorrow.  I just want her to be as comfortable as possible and in the least amount of pain as possible.

I am completely overwhelmed by the love I have for this little being.  Everyday it grows more and more.  I hate that she has to endure this, but I know that it's something we have to do and she will never remember it.  I just hope that I can comfort her and console her over the next few weeks when she needs me to.  I hope that she will bounce back quickly and we will hear that joyous laugh of hers.  

She is such a special little girl already and we have tons of prayers being said for us.  We are very blessed, not only with her, but with a very supportive and loving circle of family and friends. 

Thursday, November 21, 2013

Has it really been 9 months?

 Is my baby girl 9 months already?  I cannot believe how time flies.  I always thought it did, but now that I have a baby...it really FLIES.  Maybe that's because there's hardly a free minute in my day and I'm usually asleep before 9 pm...BORING!!  No really, I wouldn't change a thing, but I am pretty boring. 

Charlee is doing fabulous.  She is so big and crawling all over the place.  She's getting mighty brave, wanting to stand up and pull herself up on everything.  She is a 24-7 job, that's for sure.  We haven't done as much baby-proofing as we probably should, so there's a lot of "NO's" being said around the house.  We put a swing up for her outside, which she loves.  She is clapping her hands and saying lots of "mamamama's".  She has an infectious laugh and is still a happy baby.  We are very blessed and very proud of her. Rocco, our chihuahua, on the other hand, still wants nothing to do with her.  She'll laugh at him and crawl towards him and all he does is run the other way.  I am hoping he will warm up to her eventually and just accept the fact that she's here to stay.

We did meet with the cleft team and they were all so amazed at how well she was doing and how big she had gotten.  We see our surgeon one last time on Dec 9 for our pre-op appointment.  We were told that she would only be in the hospital for a day and a half after surgery, if all goes well.  She'll be monitored closely that first night to make sure she isn't having any apneas.  I'm still not totally clear about how she's going to eat.  They said she can take the bottle, but probably won't want to because her mouth will be sore. DUH.  She hasn't really taken to a cup yet, so I'm not sure what we will do, but I'm sure she'll figure it out.  She'll eat if she's hungry.  I've been doing some extra research on cleft palate recovery and most parents say that the worst is the first week.  She'll have some blood coming out her nose and mouth the first few days.  She probably won't sleep well either and will have to wear arm restraints for 3 weeks.  I plan on keeping her pain as regulated as much as possible.  Luckily, we will have help during the recovery period from family.  I'm looking forward to it because I want it to be over, but I am dreading it because I fear the unknown.  I figure that if thousands of children can go through this surgery every year with success stories, then so can we.

It's amazing to me how resilient we are.  I always thought I was a strong person, but in retrospect, I had never really gone through anything challenging.  But, now after infertility, child birth, and mothering a daughter with a special need, I realize how strong I am.  I realize how, as people, we adapt to our surroundings and we rise to the occassion. We get through hard times, unexpectedly, and we become better, more empathetic people. 









Thursday, October 3, 2013

The Working Mom

It's been 2 months since I've written...oops. Being a full time mom and a full time teacher takes up ALOT of my time.  We are definitely into a routine now and I don't know what the hell I did with my time before having a baby.  The morning is rushed, as I have to get up and get myself ready along with getting Charlee ready and dropped off at the sitter's house by 7. Waking up before 6 is so hard, but thankfully she is sleeping through the nights more than not.  I pick her up around 4 and we play when we get home.  She loves her bouncer and is beginning to scoot.  I'd imagine she'd be crawling soon.  She eats solids twice a day now, which is quite messy and she is learning the sippy cup.  I can't believe she's going on 8 months! Like I said before....time flies! She sits up and plays with toys and loves the bath.  She's even said what sounds like "mama".   Lately, she's been very attached to me, wanting only me to hold her.  I have to admit that I love that, but it can also be very tiring.  By the time I put her to bed around 7, I am ready to lay in bed and enjoy just an hour or so to myself.  But, I have a husband and he needs me too.  It's not easy...balancing a job, a baby, and a marriage.  It's hard work sometimes and I can say that I was not prepared for how different my life would become.  However, I would not trade it for anything.  Charlee's morning smile makes it all worth it and with that face, all the "work" is irrelevant.  

We meet with the cleft team in a few weeks, so I'm hoping to get some more information about her upcoming surgery.  I can't believe it's only 2 months away.  I'm so ready to just get it over with.  Since the surgery is so close to Christmas, I don't know how celebratory her first Christmas will be, but hopefully she will be feeling well enough to enjoy that day.  And if not, oh well.  We will give her a proper Christmas when she's ready.  The important thing is getting her through the surgery safely and making her recovery comfortable.  She's such a little trooper already.  I know in my heart she will be fine....can't same the same for me! 


Monday, August 5, 2013

So much has happened in the last few weeks.  Some good and some bad. Charlee did get her tubes put in and has been doing fine.  She did well with anesthesia and was a trooper for not eating for almost ten hours.  Within about 30 minutes after surgery, she was back to her normal, happy self.  I wasn't nervous for the procedure, but I will say, as I handed her over to the anesthesiologist, I got a glimpse of our future.  This was a short procedure and I knew she would be back in my arms within minutes with no real recovery.  But, when her palate surgery happens, I know it'll be an entirely different scenario.  there will be hours of waiting and weeks of recovery.  I try not to think about it, but it is in the back of my mind because I know time flies and December will be here before we know it.

In addition, we had a few appointments this week.  One was with the pulmonary specialist to finally go over her sleep study that was done over a month ago and one was with the geneticist to go over the testing done in the NICU.  It's amazing how long it takes to get results especially when it involves an infant, but I won't go there.  Basically, Charlee was finally discharged from her apnea monitor.  The monitor she's been on since birth and the one I've been trying to get her off of for three months, but I kept getting the run around from the cleft team...again...I won't go there.  He did say her sleep study was ok, but that she had 16 central apneas, the longest one being 5 seconds.  He began talking about needing an MRI and how the brainstorm could be pushing on the spine causing the apnea...I interjected.  I began telling him how the sleep study was a total nightmare and how she cried throughout the entire night, had an ear infection, hardly slept etc etc...with that information he automatically said that was probably the reason for the apneas and didn't seem that concerned.  All I could think to myself was...MRI??Really?? Another test, another doctor, more waiting, more worrying.  Am I being too laid back? I don't know.  I can only go off of my motherly instincts and what I see with my daughter every day 24-7.  So, he discharged her from the monitor and cleared her for surgery.  I follow up with him in 6 months and I feel good about that.   

As for the Geneticist, she really rained on my parade.  I had already been told that her genetic test was normal, but didn't know the details.  Her chromosomes are normal and they were specifically looking at chromosome 22 for a craniofacial abnormality, which Charlee doesn't have.  However, when the dr examined her, she noticed Charlee's sunken chest.  I've never mentioned this, but Charlee has pectus excavatum.  It's a dip in her chest.  We noticed it when she was born, but never thought much of it.  The geneticist told me that it's a symptom of Sticklers Syndrome.  Here we go again...Sticklers.  I heard of this in the NICU, but thought Charlee was clear of it when they examined her eyes.  Apparently, Sticklers can effect the eyes, but can also effect other things.  It's a connective tissue disorder that can cause pectus excavatum AND Pierre Robin.  Ultimately, we decided to follow up in 6 months and see if we need to do that testing.  In a way, I want to know, but then again ignorance is bliss.  I know that if she does have the syndrome, we will deal with it, but I just don't want her having any more challenges than she already has.  She will go through more at the age of 10 months than most people will go through their entire childhood or even entire adulthood.  It doesn't seem fair.  I have googled the hell out of Sticklers on the internet and have decided to take all that information with a grain of salt.  I can't process any more "what ifs" right now.  

When you have a "sick" child or a child with special needs, it can seem like your whole world is crashing.  It can also feel like the end of the world.  I hate that I've been to the doctor more in the last 6 months than I have my entire life.  I hate that I already have 6 appointments lined up on my calendar from Sept till January, and that doesn't even include the cleft team or surgery.  I hate that she was born with the cleft palate, with Pierre Robin, and possibly with Stickers.  I hate it, but I know I have a choice...I can choose to dwell on her imperfections and her daunting surgery or I can cherish each and every "normal" day I have with her.  

I love her smile.  I love her eyes.  I love how she looks at me.  I love her laugh and even her powty face. I love how she plays with her feet and how she lets me kiss her mouth. I love how she makes TJ and I laugh out loud and how she brings a new joy to our lives everyday.  She is a perfect addition to our family and I feel lucky to be her mom.

Friday, July 12, 2013

No time to write, too tired to care!

Charlee is approaching 5 months and so much has happened since I last wrote! She is now weighing over 14 pounds and 26 inches long.  Still in the top 90% for height.  Tall like her mommy!  One memorable event was her baptism.  Family and friends came out to share in her special day.  Although, we weren't really impressed with the ceremony itself (it was very informal), the party afterwards was a success.  I get nervous every time we do something new with her because I never know how things will go, but it always seems to go smoothly.  I am much more comfortable and confident with her these days.  When she was first born and even for a few months, I was scared to go anywhere.  Now I can't wait to get out of the house with her!  It's definitely like she's attached to me...similar to being in my belly.  She goes everywhere with me and we are always together.  When I'm not with her, thankful at times to get a break, I feel like a part of me is missing.  It will be challenging for both of us when I go back to work in a month.  

Medically, things haven't been great for lil Charlee.  She's been suffering from ear infections for over a month now and needs tubes.  I have an appointment in a few days with the ENT and am hoping he can fit her in for tubes soon! Poor girl has been on antibiotics for a month, not to mention her sleep has been so off and I can tell she is in pain sometimes.  Unfortunately, when her sleep is off, mine is too! I never knew tired like I know it now.  Some days I just get through...don't know how, just do.  Oh well.  I know it'll get better.  I'm hoping it'll get better once she gets tubes put in and she might actually start sleeping through the night.  One can hope! Despite being on the medicine, She still cries and tugs at her ears.  I hate being so helpless in all this, especially knowing that the worst is yet to come.  She's such a trooper though.  Smiles most of the time and laughs out loud a lot.  She's so cute and I'm not just saying that because she's mine!

We've started a few solids.  She's tried carrots and squash so far.  She's done pretty well with it.  She is almost sitting up on her own and loves to hold and feel things.  She is still very alert and likes to look around at everything.  She can recognize Rocco, our dog, and knows her name.  She loves TV...uh oh.  She's still losing her hair, so chances are she will be like me...bald till the age of 2! She's got my ears too....the one thing I didn't want to pass on.  Good thing she will have hair, eventually, to cover them.