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, November 21, 2013
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!
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.
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.
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.
Monday, June 3, 2013
3 1/2 months old
I cannot believe how Charlee has grown, not just in size, but in her personality too. She weighs 12.4 and should be between 24-25 inches long. She is a long baby. Last time she was measured, she was in the 98% percentile for height. I have packed all the newborn outfits away and will be doing the same with her 3 month clothes very soon. Size 1 diapers are getting too small...I can remember when they were so big on her, we had to fold down the top. Time flies! She looks so big in her carseat now and is on the verge of rolling over. She laughs and smiles all the time and makes oohs and aahhs. She has a very high pitched scream too, that she enjoys hearing. She loves being held by both mommy and daddy and we love dancing around with her to music...mostly the oldies!
TJ and I have been wanting this....her to get bigger and the surgery date to come quicker. Her surgery is tentatively scheduled for December 19. But, the more I watch her grow and change, I maybe want to freeze time a bit. I hear moms say that this time will fly by and soon she'll be walking and you'll want those baby days back. I have realized that I want to take every day as it comes and Cherish these precious moments, when I can rock her to sleep and hold her in my arms. On the other hand, we just want to get through her surgery. We both are dreading that day...to have to see our little baby girl head into surgery and be put under. It seems like such an ordeal for a ten month old to go through. I know I will have to put a tough front on for her, but I will be a mess inside. But, I also know that she is strong. She has proven that to us since day 1 and I have no doubt that she will adapt and thrive, just like she has the last several months. We have been blessed with a happy, beautiful baby and I wouldn't change one thing about her!
TJ and I have been wanting this....her to get bigger and the surgery date to come quicker. Her surgery is tentatively scheduled for December 19. But, the more I watch her grow and change, I maybe want to freeze time a bit. I hear moms say that this time will fly by and soon she'll be walking and you'll want those baby days back. I have realized that I want to take every day as it comes and Cherish these precious moments, when I can rock her to sleep and hold her in my arms. On the other hand, we just want to get through her surgery. We both are dreading that day...to have to see our little baby girl head into surgery and be put under. It seems like such an ordeal for a ten month old to go through. I know I will have to put a tough front on for her, but I will be a mess inside. But, I also know that she is strong. She has proven that to us since day 1 and I have no doubt that she will adapt and thrive, just like she has the last several months. We have been blessed with a happy, beautiful baby and I wouldn't change one thing about her!
Monday, May 20, 2013
Mothers are the real Super heroes!
When I was struggling to get pregnant, I wanted to curse every mom I came in contact with. I carried around tons of resentment. Now, that I am a mom, I have a new found respect for mothers. It doesn't matter how helpful or hands-on a father is, there are just some things only a mother can do. I spend 24/7 taking care of Charlee and we definitely have a daily routine. Don't get me wrong, T.J. does help out, but I do feel like the primary caregiver...and I wouldn't change that. I've gone from dreading the nighttime to looking forward to her 2 am feeding and 6 am feeding. Mostly, because I'm the first person she sees everyday. She smiles as soon as she sees me and won't take her eyes off me until she drifts back to sleep at the end of her bottle. She now holds on to one of my fingers while I'm feeding her and won't let go. It doesn't matter where she is in the room or who is holding her, she searches for me, and when she finds me, she automatically smiles. I love that I can do that to her.
Why are mothers super heroes? I believe we can do things a man cannot. Obviously, we can carry a child and birth a child, but there's so much more. There have been nights of no sleep. There have been bouts of crying and spitting up. There have been hours of wanting to be held. There have been doctor appointments and shots. There have been times that have required lots of patience and lots of perserverance. I don't know where we find the strength sometimes, but we do. I have adjusted to minimal sleep and have learned my daughter's needs and wants. I know exactly when she's tired and when she's hungry. I know that she likes to sit in her swing, first thing in the morning, and watch Disney. But, I also know when she's had enough. I know that she'll fall asleep in the car, even if she starts out crying. I could attribute this to the fact that we spend every day together, but I also attibute it to being a woman. I think there's something to be said about a woman's maternal instinct. Before I had Charlee, I had no idea what kind of mother I was going to be or how I would figure it all out. But, the moment I held her, it just came naturally. It's funny how quickly you learn to do things. I swear I could change her diaper with my eyes closed. The relationship between a mother and a child is an amazing thing.
Not to leave out dads...the ones who probably help keep us sane and definitely help keep our humor. Although sometimes I want to kill my husband, I know I couldn't do this without him and I understand that he is still learning. I look forward to watching the relationship develop between him and Charlee. Although I am the tired and sometimes stressed out one, I am also the lucky one...I'm her mom.
Why are mothers super heroes? I believe we can do things a man cannot. Obviously, we can carry a child and birth a child, but there's so much more. There have been nights of no sleep. There have been bouts of crying and spitting up. There have been hours of wanting to be held. There have been doctor appointments and shots. There have been times that have required lots of patience and lots of perserverance. I don't know where we find the strength sometimes, but we do. I have adjusted to minimal sleep and have learned my daughter's needs and wants. I know exactly when she's tired and when she's hungry. I know that she likes to sit in her swing, first thing in the morning, and watch Disney. But, I also know when she's had enough. I know that she'll fall asleep in the car, even if she starts out crying. I could attribute this to the fact that we spend every day together, but I also attibute it to being a woman. I think there's something to be said about a woman's maternal instinct. Before I had Charlee, I had no idea what kind of mother I was going to be or how I would figure it all out. But, the moment I held her, it just came naturally. It's funny how quickly you learn to do things. I swear I could change her diaper with my eyes closed. The relationship between a mother and a child is an amazing thing.
Not to leave out dads...the ones who probably help keep us sane and definitely help keep our humor. Although sometimes I want to kill my husband, I know I couldn't do this without him and I understand that he is still learning. I look forward to watching the relationship develop between him and Charlee. Although I am the tired and sometimes stressed out one, I am also the lucky one...I'm her mom.
Tuesday, April 23, 2013
2 Months Later
Charlee is now 2 months old and thriving. All her tests have been normal and she is doing everything a baby should. She is still on an apnea monitor, but it never goes off and I have a feeling she'll be discharged from it very soon. She is eating 4 oz per feeding every 3-4 hours. We have to keep her weight up before surgery. She is a happy baby, only fussing when she's hungry. We've been blessed! She sleeps well...usually 4 or more hours at a time during the night. She makes me smile and laugh all the time and she is soooo cute!!! I love just looking at her little face.
She is currently 10.8 in weight and almost 24 inches long. She is in the 95% for height, so we think she may end up being tall and lean. We have several doctors appointments coming up with a geneticist, cardiologist, and the surgeon. She has had her eyes checked and everything looked great.
Sometimes Pierre Robin Sequence and/or a cleft palate can be associated with some other genetic disorders, but as far as we can tell Charlee doesn't have anything genetically wrong. TJ and I are looking forward to her surgery, so we can move on from there. She most likely will need speech therapy and maybe some dental work. We have to stay positive and hope for the best.
Motherhood has not been easy. I can say it's been a little tougher for me because she did have some problems in the beginning and still requires a special bottle. We have to be on the lookout for ear infections as well. But, things are getting easier each day and my body is adjusting to 5-6 hours of sleep per night. I miss her when I'm not with her and love holding her close to me, just so I can hear all the little noises she makes. She smiles and laughs all the time and I especially love it when she smiles at me. I feel our bond already. Life is sometimes hard, but life is good! Wouldn't change a thing.
She is currently 10.8 in weight and almost 24 inches long. She is in the 95% for height, so we think she may end up being tall and lean. We have several doctors appointments coming up with a geneticist, cardiologist, and the surgeon. She has had her eyes checked and everything looked great.
Sometimes Pierre Robin Sequence and/or a cleft palate can be associated with some other genetic disorders, but as far as we can tell Charlee doesn't have anything genetically wrong. TJ and I are looking forward to her surgery, so we can move on from there. She most likely will need speech therapy and maybe some dental work. We have to stay positive and hope for the best.
Motherhood has not been easy. I can say it's been a little tougher for me because she did have some problems in the beginning and still requires a special bottle. We have to be on the lookout for ear infections as well. But, things are getting easier each day and my body is adjusting to 5-6 hours of sleep per night. I miss her when I'm not with her and love holding her close to me, just so I can hear all the little noises she makes. She smiles and laughs all the time and I especially love it when she smiles at me. I feel our bond already. Life is sometimes hard, but life is good! Wouldn't change a thing.
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