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.
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