Today was one of those days that I could have tried more than once for reasons that were all too small, but seemed ever so big. And then I did cry. Exactly 12 hours after the first moment I wanted to cry, I let the flood gates open.
My guilty pleasure nightly is a log on to people.com, usmagazine.com, and todayshow.com. I like to know what is happening in the real world...lol. A story on the Today Show caught my attention. It was a piece about a dad who chronicled his son's life from a preemie to his homecoming 107 days later thru his first year of life. And so logged on and cried and cried more when I saw that his mom held him for the first time on Sloane's 2nd birthday.
Sloane was not a preemie and certainly didn't have the same medical equipment as Wade Miles, but the sounds of the NICU room, the sight of oxygen tubes and a NG tube topped off with an IV, the look in Wade's moms eyes, and the visions from the ride in the car to and fro the NICU, seeing Wade go home with a medical apparatus attached to him brought the tears....
I thought back to when we arrived home from the NICU with our feeding tube and severe case of reflex that left us all sitting upright for months terrified of gastric juices aspirating through Sloane's laryngeal cleft into her lungs...and how I would sit and watch Sloane 24 hours a day petrified that she would stop breathing. My MIL would gently urge me to move from crimson chair and half that I became a fixture in because Sloane's swing that she basically lived in was directly across from it.
I applaud Wade's dad for allowing the world to see the amazing journey of a preemie or a child with medical needs at birth.
Do you need a cry?...here it is all swaddled up in an amazing little boy! Here is the address....
http://vimeo.com/78393869
Thank to Wade's dad......I needed that cry...for 12 hours it was brewing and stewing!!
Monday, November 25, 2013
Thursday, November 7, 2013
"It" turns to "Them"
This story has a month long back story that brings us to yesterday in Dr. Reibman's office. The back story isn't as comforting as the exchange Dr. Reibman and I had yesterday, but here it is.
Sloane has had this thing...this bump...this pimple...this never going away red mark on her chin for weeks. I assumed it was a pimple/blemish from her preschool hands and treated it that way for weeks. Last week though, mammie alerted me to all the other options it could be. I listened and filed them in the back of my mind waiting for "it" to disappear. Well the beginning of the week, the "it" grew into a "them" and I decided to call the doc and so off we went....thankfully!! Seeing as though, mammie was right. It wasn't a pimple or a blemish. "It" that turned into "them" is an infection under the skin. The actual name we never diagnosed. We left Dr. Reibman with a topical antibiotic cream and an oral medicine. Super excited to give Sloane oral meds twice a day for 7 days. NOT!!!
While I had Dr. Reibman's face to face, I explained about our decision on December 9th. I had been thinking of calling her to discuss, but never got around to it. Once I went through my spiel, she stated that she 100% agrees with our decision. I aksed "even though we are putting her under again" and she said yes. Followed by something like "Tarra, I hear the wheeze how. We need to know why at this point. It's in her airway. This isn't an asthma wheeze. Let's get some answers."
I have to say, it felt good to have her stamp of approval. I think we will always 2nd guess ourselves in regards to inflicting pain or discomfort or fears in our children. I have not wrapped my head around Sloane going into the OR that day or the night we will spend in ICU after the procedure. Historically, Sloane has some trouble coming out of anesthesia. Accepting the procedure as a go is one thing. Preparing for it mentally and emotionally is another.
Sloane has had this thing...this bump...this pimple...this never going away red mark on her chin for weeks. I assumed it was a pimple/blemish from her preschool hands and treated it that way for weeks. Last week though, mammie alerted me to all the other options it could be. I listened and filed them in the back of my mind waiting for "it" to disappear. Well the beginning of the week, the "it" grew into a "them" and I decided to call the doc and so off we went....thankfully!! Seeing as though, mammie was right. It wasn't a pimple or a blemish. "It" that turned into "them" is an infection under the skin. The actual name we never diagnosed. We left Dr. Reibman with a topical antibiotic cream and an oral medicine. Super excited to give Sloane oral meds twice a day for 7 days. NOT!!!
While I had Dr. Reibman's face to face, I explained about our decision on December 9th. I had been thinking of calling her to discuss, but never got around to it. Once I went through my spiel, she stated that she 100% agrees with our decision. I aksed "even though we are putting her under again" and she said yes. Followed by something like "Tarra, I hear the wheeze how. We need to know why at this point. It's in her airway. This isn't an asthma wheeze. Let's get some answers."
I have to say, it felt good to have her stamp of approval. I think we will always 2nd guess ourselves in regards to inflicting pain or discomfort or fears in our children. I have not wrapped my head around Sloane going into the OR that day or the night we will spend in ICU after the procedure. Historically, Sloane has some trouble coming out of anesthesia. Accepting the procedure as a go is one thing. Preparing for it mentally and emotionally is another.
Tuesday, November 5, 2013
10,000 Sips of Heaven
Thank you sooo much to all our followers!!!
A Sip Of Heaven....... has had over 10,000 views from all over the world! This is super exciting considering I am a one woman show running a very simple mom and pop operation in the Laryngeal Cleft world!!!
The support and interest in our journey is heart-warming!
A Sip Of Heaven....... has had over 10,000 views from all over the world! This is super exciting considering I am a one woman show running a very simple mom and pop operation in the Laryngeal Cleft world!!!
The support and interest in our journey is heart-warming!
Monday, November 4, 2013
From Toddler to Beast
Have you ever tried something that you were unsure of, but hoped for the best? That is exactly what I did on Friday. Sloane had extended day at preschool on Friday which means she is not picked up until 2:00pm. Add all the good-byes, chit -chat and the ride home on and we did not arrive in the doors until 2:40.
I watch Sloane carefully for the sleepy cues and it appeared she had probably surpassed them during art class and was on her 2nd wind. I decided to try something I never have to date. I decided to let her rest and not force a nap. It was close to 3pm and a nap at this point might cause Sloane's parents to fall asleep before her. LOL
Feeling confident in my decision, Sloane spent 45 minutes playing quietly on her bed with her babies. I made "the call" during that time to my hubby to forewarn him that there would be no dinner out on the town or Pinkberry tonight. We would be hunkering down for an early night-night because Sloane had no nap today. Instantaneously he responded...WHY??? I explained the situation and suggested it would be a good trail run to see if it was time to be less rigid about the nap. I was keeping committed to my decision.
That commitment lasted until 5:30 when a beast arrived in my house. It was already Halloween the day before so this clearly wasn't a costume...it was my toddler out of control! For the first 30 mins or so, I let it ride. But once 6:30pm showed up, I realized I had made a mistake. Sloane was beside herself with exhaustion and her behavior was a mix of screaming tantrums, open-fisted violence, and quarterback quality throwing. It was horrible and truly, I felt badly for her. Sloane could not get her shit together. She was at her worst constantly for the entire hour and 1/2. I was having trouble remembering my sweet daughter.
Now granted, she was in bed earlier than usual.....hitting the pillow (not the bed) finally at 8:00pm. An overtired child doesn't exactly fall asleep quietly and without a fight. HA! The trade-off of silence in our house at 8, rather than 9:15 wasn't enough for me to think I made the right decision.
Sloane slept thru the night...residing in dreamland for 11 1/2 hours straight. When she woke, I was smacked in the face again with the "you made a mistake" stick. Sloane woke up like a bear...growling and unhappy. Fifteen minutes after her eyes opened, I was longing for nap time again. LOL It has been confirmed. In order for there sunshine and rainbows in our home, there must be nap time. It makes everyone happier! I am very happy right now....cant you feel it...we are one hour into a nap!!! Yahoo!
Tonight, once our lady has hit the hay, we will be composing an email to Dr. Rahbar about December 9th. It is creeping up on us.. We have not changed our minds; Miss Wheeze has been creeping around the past 2 weeks. We have some pointed questions we would like answered before Sloane hits the OR.
I watch Sloane carefully for the sleepy cues and it appeared she had probably surpassed them during art class and was on her 2nd wind. I decided to try something I never have to date. I decided to let her rest and not force a nap. It was close to 3pm and a nap at this point might cause Sloane's parents to fall asleep before her. LOL
Feeling confident in my decision, Sloane spent 45 minutes playing quietly on her bed with her babies. I made "the call" during that time to my hubby to forewarn him that there would be no dinner out on the town or Pinkberry tonight. We would be hunkering down for an early night-night because Sloane had no nap today. Instantaneously he responded...WHY??? I explained the situation and suggested it would be a good trail run to see if it was time to be less rigid about the nap. I was keeping committed to my decision.
That commitment lasted until 5:30 when a beast arrived in my house. It was already Halloween the day before so this clearly wasn't a costume...it was my toddler out of control! For the first 30 mins or so, I let it ride. But once 6:30pm showed up, I realized I had made a mistake. Sloane was beside herself with exhaustion and her behavior was a mix of screaming tantrums, open-fisted violence, and quarterback quality throwing. It was horrible and truly, I felt badly for her. Sloane could not get her shit together. She was at her worst constantly for the entire hour and 1/2. I was having trouble remembering my sweet daughter.
Now granted, she was in bed earlier than usual.....hitting the pillow (not the bed) finally at 8:00pm. An overtired child doesn't exactly fall asleep quietly and without a fight. HA! The trade-off of silence in our house at 8, rather than 9:15 wasn't enough for me to think I made the right decision.
Sloane slept thru the night...residing in dreamland for 11 1/2 hours straight. When she woke, I was smacked in the face again with the "you made a mistake" stick. Sloane woke up like a bear...growling and unhappy. Fifteen minutes after her eyes opened, I was longing for nap time again. LOL It has been confirmed. In order for there sunshine and rainbows in our home, there must be nap time. It makes everyone happier! I am very happy right now....cant you feel it...we are one hour into a nap!!! Yahoo!
Tonight, once our lady has hit the hay, we will be composing an email to Dr. Rahbar about December 9th. It is creeping up on us.. We have not changed our minds; Miss Wheeze has been creeping around the past 2 weeks. We have some pointed questions we would like answered before Sloane hits the OR.
Thursday, October 24, 2013
Why?? Huh??
So you should see the looks on people's faces when we say that Sloane is having an exploratory looksee of her airway. Words that come to mind are: baffled, confused, judgemental, and concerned. The decision to allow to Dr. Rahbar to explore Sloane's airway was not made lightly and although, I know it is the right one...that does not mean it doesn't come without guilt and worry. SO I completely understand the looks on our family and friend's faces when we talk about December 9th.
We have put Sloane under anesthesia more times in 3+ years that our entire family combined. It is not something that comes easily, not to mention that this time, Sloane will be completely aware of what is happening. In the years past, Sloane was too young to connect the dots. But considering that she is obsessed with medical things these past few weeks, to say I am nervous is an understatement. Sloane has been asking about hospitals, ambulances, doctors and all that comes with them since Uncle Chucka took a spill over a month ago and landed himself in an ambulance right before her big eyes. Sloane was terrified as well as like a dog on a bone for details....she wouldn't stop or couldn't stop asking about Chucka's boo boo and its progress. Add this new obsession to the fact that her favorite dress-up attire is her doctor's coat and bag, I am thinking our trip to Children's will not be quiet.
Sloane, in regards to her laryngeal cleft, is over it. When she takes and swallows a big sip and we comment on it with "little sips!", she looks us straight in the face with a "I am not coughing, momma, see." And, the truth to told, to all my LC followers out there...there is a light at the end of the sip and swallow tunnel......she isn't coughing. Sloane is managing all liquids in all vessels fantastically about 90% of the time.
This exploratory looksee isn't about her Laryngeal Cleft. It is about her ever so present wheeze. Although we welcome all the information we can gather about Sloane's LC, that isn't the point to this procedure. Dr. Rahbar hasn't been scuba diving into Sloane's airway since her surgery in March of 2011; he has only been fishing.....if you get my drift! I'd like to know what her cleft looks like 2 1/2 years later! Her airway is so much larger considering her surgery was done when she was 9 months old.....so I am thinking Dr. Rahbar will get a bird's eye view this time???
As for the wheeze, who has been showing up around here every few days, I am more than interested what her place of origin is. Does she reside in Sloane's tight vocal cords, her cozy narrow airway, or is she whispering...asthma ever so quietly....up from her lungs?? This is truly why we want this exploratory looksee. Sloane is getting older and her days of running on the soccer field, jolting across the tennis court and tapping her way thru Gold Ship Lollipop are nearing. So, when Miss Wheeze shows up...we want to know why??? And hopeful that December 9th will answer that question.
We have put Sloane under anesthesia more times in 3+ years that our entire family combined. It is not something that comes easily, not to mention that this time, Sloane will be completely aware of what is happening. In the years past, Sloane was too young to connect the dots. But considering that she is obsessed with medical things these past few weeks, to say I am nervous is an understatement. Sloane has been asking about hospitals, ambulances, doctors and all that comes with them since Uncle Chucka took a spill over a month ago and landed himself in an ambulance right before her big eyes. Sloane was terrified as well as like a dog on a bone for details....she wouldn't stop or couldn't stop asking about Chucka's boo boo and its progress. Add this new obsession to the fact that her favorite dress-up attire is her doctor's coat and bag, I am thinking our trip to Children's will not be quiet.
Sloane, in regards to her laryngeal cleft, is over it. When she takes and swallows a big sip and we comment on it with "little sips!", she looks us straight in the face with a "I am not coughing, momma, see." And, the truth to told, to all my LC followers out there...there is a light at the end of the sip and swallow tunnel......she isn't coughing. Sloane is managing all liquids in all vessels fantastically about 90% of the time.
This exploratory looksee isn't about her Laryngeal Cleft. It is about her ever so present wheeze. Although we welcome all the information we can gather about Sloane's LC, that isn't the point to this procedure. Dr. Rahbar hasn't been scuba diving into Sloane's airway since her surgery in March of 2011; he has only been fishing.....if you get my drift! I'd like to know what her cleft looks like 2 1/2 years later! Her airway is so much larger considering her surgery was done when she was 9 months old.....so I am thinking Dr. Rahbar will get a bird's eye view this time???
As for the wheeze, who has been showing up around here every few days, I am more than interested what her place of origin is. Does she reside in Sloane's tight vocal cords, her cozy narrow airway, or is she whispering...asthma ever so quietly....up from her lungs?? This is truly why we want this exploratory looksee. Sloane is getting older and her days of running on the soccer field, jolting across the tennis court and tapping her way thru Gold Ship Lollipop are nearing. So, when Miss Wheeze shows up...we want to know why??? And hopeful that December 9th will answer that question.
Saturday, October 12, 2013
Settled In...Kind Of
The sleep cycle continues. I have gotten a small handle on it and I am pretty sure most of the moms in my circle of trust are tired of hearing me about such a silly concern. I have exhausted the topic...no pun intended!!! Hahahahaha
When I was a classroom teacher, I would give myself until the Columbus Day holiday to get settled into my new school year. The same rule of thumb rang true for this school year. I had hoped by this weekend that we would all have found our new groove! And I have to say, we are almost there!! Everyone is settling into their new lifestyle changes....I can say I was happy about mine until 12:10pm yesterday!
That is when ti-ti told me, after picking Sloane up from preschool, that she has a bus field trip on Wednesday. Now, lets review a bit. It was Friday when I was first hearing of this, I have Monday off from the college for the long weekend so I cant take Wednesday off as well, and this is Sloane's first bus ride and first field trip. ANNOYED isn't even the most accurate adjective to describe my mood. There is no part of this stay at home mom who wants to miss such a milestone, but there is a rational part of this working mom that says taking the day off for this may not be the best choice for a variety of reasons.
I decide to work through my mood before I saw Sloane, who is super super excited for this trip to the zoo. And I decide to spin this experience into a positive one. After explaining the issue to my hubby, he immediately says "I'll go!" Which is perfect because I know, given the choice Sloane would want her daddy to go with her. So what do I do to make myself feel better...I pull a jedi mind trick out of my bag! I decide to let Sloane pick who she wants to come with her knowing quite well it won't be me and then I won't have to feel like the worst mom because I am working instead of going on Sloane's first field trip. My plan goes exactly as I expected :) I will drag my feet to the college on Wednesday while Sloane and her daddy board the yellow bus bound for the elephant exhibit and to that I say...being a working mom sucks!!!
Now, Sloane had her first preschool friend birthday party this past weekend. I was unsure when the invitation arrived if we would be attending. Not because we had plans, not because the family wasn't super nice, not because Sloane would have had trouble enjoying herself.....but because I didn't want to go. It may be surprising to hear that this mommy blogger can be quite shy and reserved when in a social situation of people she does not know. I, basically, was breaking out in a sweat thinking about being a 3 year old's birthday party with a group of adults I did not know. My hubby and "the machine" confirmed that Sloane had to go so I responded yes on the premise that my hubby would accompany me for social support. LOL!! The Tinkerbell gymnastics party turned out to be super fun all around. We met many nice parents and Sloane loved her first "friend" party. It was clear when I went over to the table to check on Sloane as she ate her lunch that she doesn't (thank god) have trouble being with people she doesn't know...I said "Sloane, is everything ok?" She replied "Yes, momma, go stand over there with daddy." I was in shock!! Is it possible that at 3, my child already doesn't want my helicopter parenting!!
Over in laryngeal cleft world, there is some news. I have been waiting to put this in black and white print because once I do....it becomes real! Sloane's exploratory scope of her airway is scheduled for December 9th. More to come on that topic when I wrap my head around it!
When I was a classroom teacher, I would give myself until the Columbus Day holiday to get settled into my new school year. The same rule of thumb rang true for this school year. I had hoped by this weekend that we would all have found our new groove! And I have to say, we are almost there!! Everyone is settling into their new lifestyle changes....I can say I was happy about mine until 12:10pm yesterday!
That is when ti-ti told me, after picking Sloane up from preschool, that she has a bus field trip on Wednesday. Now, lets review a bit. It was Friday when I was first hearing of this, I have Monday off from the college for the long weekend so I cant take Wednesday off as well, and this is Sloane's first bus ride and first field trip. ANNOYED isn't even the most accurate adjective to describe my mood. There is no part of this stay at home mom who wants to miss such a milestone, but there is a rational part of this working mom that says taking the day off for this may not be the best choice for a variety of reasons.
I decide to work through my mood before I saw Sloane, who is super super excited for this trip to the zoo. And I decide to spin this experience into a positive one. After explaining the issue to my hubby, he immediately says "I'll go!" Which is perfect because I know, given the choice Sloane would want her daddy to go with her. So what do I do to make myself feel better...I pull a jedi mind trick out of my bag! I decide to let Sloane pick who she wants to come with her knowing quite well it won't be me and then I won't have to feel like the worst mom because I am working instead of going on Sloane's first field trip. My plan goes exactly as I expected :) I will drag my feet to the college on Wednesday while Sloane and her daddy board the yellow bus bound for the elephant exhibit and to that I say...being a working mom sucks!!!
Now, Sloane had her first preschool friend birthday party this past weekend. I was unsure when the invitation arrived if we would be attending. Not because we had plans, not because the family wasn't super nice, not because Sloane would have had trouble enjoying herself.....but because I didn't want to go. It may be surprising to hear that this mommy blogger can be quite shy and reserved when in a social situation of people she does not know. I, basically, was breaking out in a sweat thinking about being a 3 year old's birthday party with a group of adults I did not know. My hubby and "the machine" confirmed that Sloane had to go so I responded yes on the premise that my hubby would accompany me for social support. LOL!! The Tinkerbell gymnastics party turned out to be super fun all around. We met many nice parents and Sloane loved her first "friend" party. It was clear when I went over to the table to check on Sloane as she ate her lunch that she doesn't (thank god) have trouble being with people she doesn't know...I said "Sloane, is everything ok?" She replied "Yes, momma, go stand over there with daddy." I was in shock!! Is it possible that at 3, my child already doesn't want my helicopter parenting!!
Over in laryngeal cleft world, there is some news. I have been waiting to put this in black and white print because once I do....it becomes real! Sloane's exploratory scope of her airway is scheduled for December 9th. More to come on that topic when I wrap my head around it!
Sunday, October 6, 2013
Never Think Never
Something happened that I never thought would. I uttered words I never though I would. I said these words out loud: It is easier to go to work than to be a stay at home mom! Never did I think I would say that. Never did I believe it when people said it was true. Never could imagine that in one short month I would have figured it out.
Sloane goes to preschool while I go to work 4 days a week. We both have one day off . The same day. Thursdays. Every Thursday since the beginning of the school year has been a struggle. A struggle like we haven't had before. I am going to assume that the difficulty Sloane and I are having...we aren't exactly hitting high notes or getting our groove on.....is because of reasons that aren't comforting to this control freak mom!!!
I know that Sloane is off her sleep schedule. Something is going on with my child. She is perpetually tired. Grabbing her earlobes, tripping over her feet and listening like batteries in her listening ears have been removed. I thought by now, we would have set into a schedule. One similar to what we are used to....a timely nap followed by an age appropriate bedtime. That has not not happened yet???? What I have is a nap that starts and ends too late and a prompt bedtime that is followed by a restless falling to sleep period that is almost endless pushing bedtime to a very inappropriate bedtime. It's become a cycle I can not change which is in turn making me very tired too!!!
There are 2 very different schools of thought on this topic and I can't decide which one I want to swim with. There is the thought that Sloane is overtired and therefore unable to settle into sleep. I
have been a firm supporter of this philosophy for 3 years. The more a child sleeps, the more they want too. When Sloane was on a structured sleep schedule, I never had these issues with her not falling asleep for an hour. The 2nd thought is that Sloane is outgrowing her nap. This thought is not music to my ears!!!! I don't want to accept this thought process. I know many people whose children don't sleep after 2 or people whose children don't nap once preschool starts. I'm not ready to let go of the nap. I, clearly, know it is not about me???? I am on a mission to figure out the conundrum of the sleep cycle. It has become my obsession.
By Thursday, I am on fast forward with household errands and activities for Sloane and me. Sloane, on the other hand, is wanting to do exactly what a three year old who has been in school for the past 3 days should want to do......nothing!!! The struggle begins as soon as our day starts and tonight it didn't end until an hour after bedtime. And at one point each Thursday, I think to myself.....it is easier to go to work than stay at home with your child. I never thought I would utter those words.
After my revelation, I share my new philosophy with my sister in law who is traveling behind me by 9 months exactly. She looks me dead in the face and with a squeal says.....of course, it is. I never thought it was true but now that I head to work 1 day a week I know it is!!!! And with that, we toasted to the stay at home moms we were and the part-time working moms we have become!!!
Sloane goes to preschool while I go to work 4 days a week. We both have one day off . The same day. Thursdays. Every Thursday since the beginning of the school year has been a struggle. A struggle like we haven't had before. I am going to assume that the difficulty Sloane and I are having...we aren't exactly hitting high notes or getting our groove on.....is because of reasons that aren't comforting to this control freak mom!!!
I know that Sloane is off her sleep schedule. Something is going on with my child. She is perpetually tired. Grabbing her earlobes, tripping over her feet and listening like batteries in her listening ears have been removed. I thought by now, we would have set into a schedule. One similar to what we are used to....a timely nap followed by an age appropriate bedtime. That has not not happened yet???? What I have is a nap that starts and ends too late and a prompt bedtime that is followed by a restless falling to sleep period that is almost endless pushing bedtime to a very inappropriate bedtime. It's become a cycle I can not change which is in turn making me very tired too!!!
There are 2 very different schools of thought on this topic and I can't decide which one I want to swim with. There is the thought that Sloane is overtired and therefore unable to settle into sleep. I
have been a firm supporter of this philosophy for 3 years. The more a child sleeps, the more they want too. When Sloane was on a structured sleep schedule, I never had these issues with her not falling asleep for an hour. The 2nd thought is that Sloane is outgrowing her nap. This thought is not music to my ears!!!! I don't want to accept this thought process. I know many people whose children don't sleep after 2 or people whose children don't nap once preschool starts. I'm not ready to let go of the nap. I, clearly, know it is not about me???? I am on a mission to figure out the conundrum of the sleep cycle. It has become my obsession.
By Thursday, I am on fast forward with household errands and activities for Sloane and me. Sloane, on the other hand, is wanting to do exactly what a three year old who has been in school for the past 3 days should want to do......nothing!!! The struggle begins as soon as our day starts and tonight it didn't end until an hour after bedtime. And at one point each Thursday, I think to myself.....it is easier to go to work than stay at home with your child. I never thought I would utter those words.
After my revelation, I share my new philosophy with my sister in law who is traveling behind me by 9 months exactly. She looks me dead in the face and with a squeal says.....of course, it is. I never thought it was true but now that I head to work 1 day a week I know it is!!!! And with that, we toasted to the stay at home moms we were and the part-time working moms we have become!!!
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