Today was Sloane's first day of pre-k. Monumental, yes!! The fact that four years ago tonight, Sloane was still a patient in the NICU and hadn't made into our home is incredible. For the past 3 years, at this time of the year, I always reflect on the length of time Sloane was hospitalized after birth....from July 20 until September 10th. Each year, I am reminded just how long that is!
Today was Sloane's first day of full day pre-k. Amazing, yes!! Sloane is going to school. Real school. We have enrolled her in a school that stretches from pre-k to eighth grade. There is a uniform to be worn, a cafeteria to be eaten in, a theater stage to preform on, and a library to devour a book in. A real school. An every day 8- 2:30 school!
In classic Sloane form, she held her head high, put her backpack one and said "momma, I am so ready for this!" And she is!! I'd like to say that she is too young for a full day of enrichment and learning, but I would be lieing. She is ready. More ready than I am. It was a very long day without Sloane's company, Sloane's energy, Sloane's curiosity and her chatter!!
Today was Sloane's first day of pre-k. Unbelievable, yes. But not as unbelievable as the fact that Sloane's Laryngeal Cleft didn't play a role, at all, in her entrance physically or emotionally.. That is unbelievable. I didn't believe 4 years ago that Sloane's Laryngeal Cleft would ever be something we didn't focus on or talk about. I couldnt wrap my head around that idea. How could something that altered our lives and made our child different than those around us become unimportant??? But it has. As I filled out Sloane's entrance papers to her new school endlessly, it dawned on me that I didn't have much medical info on Sloane to fill in. Now, of course, I noted Sloane's cleft, her surgeries, and wrote a quick snip-it about her current drinking issues...which was: sometimes when Sloane drinks from an open vessel too quickly she will cough. Beyond that I wrote nothing. Unbelievable!!
Sloane's LC, four years ago was THE ONLY thing we talked about, read about, and wondered about. We wondered.....would Sloane enter school with a feeding tube attached to her because her Laryngeal Cleft would be present in her life. And here we are, today, the first day of. pre-k wondering about everything that has to do with Sloane......watching her enter school with a sports water bottle hanging off her backpack!!! Unbelievable, for sure!
Wednesday, August 27, 2014
Tuesday, July 22, 2014
To the Laryngeal Cleft Mom
I had all intentions of blogging this week about the BIG 4!! and how we spent our day on Sunday but that has been put on the back burner for today at least....
There is a mom out there who left me a very nice comment last night on a post that I wrote way back in February of 2012 entitled Are We There Yet?. She didn't leave her name or her email which is fine. But this post is for her....
To this LC mom: I know you.
I remember the days after cleft repair surgery and how slow the progress was...hanging on from swallow study to swallow study from month to month.
I remember when Sloane was 21 months very well. She still had a feeding tube attached to her daily, she was still aspirating liquids, we were in the throws of it and I felt our journey would never end.
For us, 21 months was April 2012. I could go back and re-read posts about our Laryngeal Cleft world then but I don't have to. I remember it all. I can say that back in April 2012...I never thought we would be where we are today. I had visions of the feeding tube entering into a Pre-K classroom, I had visions of weekly swallowing therapies, I had visions of Sloane having sensory issues attached to foods, I had visions of never being relaxed when liquids were handed out, I had visions of croup and pneumonia dancing in my head. I had visions of there never being normal in our home.......
All of that has gone away.....your life, too, will change and progress and little by little or sip by sip things get better. That I can tell you from my heart. Two years later at 4 years old, things are better, more normal and I can see a light.
As a mother of a child with a life altering birth defect no matter how small or how encompassing......it is true, we are different. Thank you for sharing your thoughts and embracing mine. It is true, we are not our friends, or our mothers, or the girl next door. We are different. That will never change.
Thank you for your comment...for reaching out.....for sharing in our journey and sharing yours......be in touch again please!
There is a mom out there who left me a very nice comment last night on a post that I wrote way back in February of 2012 entitled Are We There Yet?. She didn't leave her name or her email which is fine. But this post is for her....
To this LC mom: I know you.
I remember the days after cleft repair surgery and how slow the progress was...hanging on from swallow study to swallow study from month to month.
I remember when Sloane was 21 months very well. She still had a feeding tube attached to her daily, she was still aspirating liquids, we were in the throws of it and I felt our journey would never end.
For us, 21 months was April 2012. I could go back and re-read posts about our Laryngeal Cleft world then but I don't have to. I remember it all. I can say that back in April 2012...I never thought we would be where we are today. I had visions of the feeding tube entering into a Pre-K classroom, I had visions of weekly swallowing therapies, I had visions of Sloane having sensory issues attached to foods, I had visions of never being relaxed when liquids were handed out, I had visions of croup and pneumonia dancing in my head. I had visions of there never being normal in our home.......
All of that has gone away.....your life, too, will change and progress and little by little or sip by sip things get better. That I can tell you from my heart. Two years later at 4 years old, things are better, more normal and I can see a light.
As a mother of a child with a life altering birth defect no matter how small or how encompassing......it is true, we are different. Thank you for sharing your thoughts and embracing mine. It is true, we are not our friends, or our mothers, or the girl next door. We are different. That will never change.
Thank you for your comment...for reaching out.....for sharing in our journey and sharing yours......be in touch again please!
Wednesday, July 16, 2014
First I'll Be 4, and Then I'll Be 5
There is a whole lot of static going on around me that Sloane is turning 4! First off, let me say that I can not believe she is 4. I sound like every other mom in the whole world when I say...where did the time go??? It is astonishing how quickly infants turn into babies and babies turn into toddlers and toddlers turn into preschoolers!
Driving in the car last week.....Sloane told me after 4 she will turn 5 and then she won't need mommy anymore!! My heart tore, it broke and a wave of sadness came over me. I explained that she will always need a mommy and then, in her ever so sassy way, she said...well, you don't have a mommy! And then the conversation took a whole another turn.
The static buzzing around me is because yes, in fact, at 4 Sloane is on her way into life without me and I am, unconsciously, having a hard time. My hubby keeps reminding me that the life I knew as a mom is going to change as Sloane enters full day pre-k.
I think being a mom is a full time job for every one of us. Unless you are presently one, I do not think you understand how non-stop it is in all aspects of life. But our world...it was a bit more....
A motherless first time mom blessed with a child with a medical need can cause tighter bonds...to say the least.
I am reeling with the wonderful positive changes in our family...Sloane's laryngeal cleft issues have for sure taken a back seat to normal 4 year old problems (like the deer tick I removed from her belly yesterday), our lives are no longer hanging on the next steps (we have done all we can for Sloane's laryngeal cleft to this point), I am not gearing up for weekly or monthly check-ins with any medical professionals, and when Sloane takes a gulp of water.....I don't hold my breath while she gasps for hers. Life is good!
But I am feeling a bit off-kilter....my whole life revolved around Sloane and her laryngeal cleft (good, bad, healthy or unhealthy) and now I will have more of a normal mom balance in my personal world which is throwing me for a loop.
The static has been outright directed and clear like: What will Supermom wife do now?? and then I know there have been some subtle whispers behind my back. I know that my feelings don't have everything to do with a job or time. Its more the big picture of the changes to come...the lack of complete control, the little buds of wings that Sloane has started to grow, and the fact that she is growing up physically and emotionally.
So come Sunday....at 1:57am....Sloane will be 4! Four years ago, I had no clue how motherhood would shape me, fulfill me and bring me life. I had no idea that I would turn into a helicopter mom. I had no forethought that years would flash by and I would have empty day-time nest syndrome by the time Sloane was 4.
There is an almost 4 year old in our squealing with delight over her approaching birthday.
There is an almost 42 year old mom aching inside because her baby is turning 4.
And there is an almost 39 year old dad managing us both........
Driving in the car last week.....Sloane told me after 4 she will turn 5 and then she won't need mommy anymore!! My heart tore, it broke and a wave of sadness came over me. I explained that she will always need a mommy and then, in her ever so sassy way, she said...well, you don't have a mommy! And then the conversation took a whole another turn.
The static buzzing around me is because yes, in fact, at 4 Sloane is on her way into life without me and I am, unconsciously, having a hard time. My hubby keeps reminding me that the life I knew as a mom is going to change as Sloane enters full day pre-k.
I think being a mom is a full time job for every one of us. Unless you are presently one, I do not think you understand how non-stop it is in all aspects of life. But our world...it was a bit more....
A motherless first time mom blessed with a child with a medical need can cause tighter bonds...to say the least.
I am reeling with the wonderful positive changes in our family...Sloane's laryngeal cleft issues have for sure taken a back seat to normal 4 year old problems (like the deer tick I removed from her belly yesterday), our lives are no longer hanging on the next steps (we have done all we can for Sloane's laryngeal cleft to this point), I am not gearing up for weekly or monthly check-ins with any medical professionals, and when Sloane takes a gulp of water.....I don't hold my breath while she gasps for hers. Life is good!
But I am feeling a bit off-kilter....my whole life revolved around Sloane and her laryngeal cleft (good, bad, healthy or unhealthy) and now I will have more of a normal mom balance in my personal world which is throwing me for a loop.
The static has been outright directed and clear like: What will Supermom wife do now?? and then I know there have been some subtle whispers behind my back. I know that my feelings don't have everything to do with a job or time. Its more the big picture of the changes to come...the lack of complete control, the little buds of wings that Sloane has started to grow, and the fact that she is growing up physically and emotionally.
So come Sunday....at 1:57am....Sloane will be 4! Four years ago, I had no clue how motherhood would shape me, fulfill me and bring me life. I had no idea that I would turn into a helicopter mom. I had no forethought that years would flash by and I would have empty day-time nest syndrome by the time Sloane was 4.
There is an almost 4 year old in our squealing with delight over her approaching birthday.
There is an almost 42 year old mom aching inside because her baby is turning 4.
And there is an almost 39 year old dad managing us both........
Thursday, June 26, 2014
A Trade Off
How could almost one month gone by since I've written a post?? Does that mean it has all been good news on our end? Or have we been so busy that I haven't had time to update our Laryngeal Cleft world? I would say both. I have been on the blog....checking out our stats and the current viewings. It is always nice to see how many of our readers are from over seas. Just this month, we have gained a large popularity in Singapore and Australia. Pretty impressive. It makes wonder about all the parents in the world trying to navigate their Laryngeal Cleft journey. My only help is that A Sip Of Heaven is helping them on some level.
Sloane is doing well; creeping up on 4 years old in less than a month. She is off her inhaler and aside from an occasional wheeze here and there, I do not see any major issues. If any respiratory issues arise sooner than later, we will revisit the need for her inhaler. As for now, the plan is to keep her off of it until winter.
One very nice thing is that her facial skin is once again on its way to looking like porcelain. I don't think I ever posted about the effects of the inhaler on her cheeks, chin and bridge of her nose. Not sure if it was a coincidence or not, but once we started using the inhaler, she broke out with a bumpy appearance in those areas. Steroid acne?? Maybe? 3 appointments with a dermatologist over the course of 6 months and 3 creams later, not much of an improvement. But one week off the inhaler and a noticeable difference.
Now on to the most important news.......Do I dare say that I think Sloane is coughing less when drinking liquids continuously? I think so! She has the occasional cough. It's frequency is much less than it was before surgery. My thought is that her lungs are clearer, less junky, and becoming free of aspirations. Does that mean that surgery was successful....I would say so!! It is almost scary to say it. I believe it because I notice a difference, but the fear is that I could be wearing rose colored glasses when I make that statement.
The fact is that I am the only one who can make that statement. I am the only one who watches her drink day in and day out. Of course, my hubby could interject his opinion but it is me who knows the drill. So very quietly I say it, if someone asks. In a tiny voice I say, " I think she is coughing less." I'm afraid to scream it from the rooftops in fear that I am wrong.
I trust myself to think that Sloane is coughing less because we know both stitches were intact post surgery, we know that Dr. Rahbar is a specialist like no other in our eyes, and we know the odds of Sloane needing a third surgery to close her cleft tighter were minimal.
If there is one thing I know for sure without a doubt.....it is that Sloane is a nosier breather just as predicted because her airway is more narrow. The tiniest trade-off for healthy lungs!
Sloane is doing well; creeping up on 4 years old in less than a month. She is off her inhaler and aside from an occasional wheeze here and there, I do not see any major issues. If any respiratory issues arise sooner than later, we will revisit the need for her inhaler. As for now, the plan is to keep her off of it until winter.
One very nice thing is that her facial skin is once again on its way to looking like porcelain. I don't think I ever posted about the effects of the inhaler on her cheeks, chin and bridge of her nose. Not sure if it was a coincidence or not, but once we started using the inhaler, she broke out with a bumpy appearance in those areas. Steroid acne?? Maybe? 3 appointments with a dermatologist over the course of 6 months and 3 creams later, not much of an improvement. But one week off the inhaler and a noticeable difference.
Now on to the most important news.......Do I dare say that I think Sloane is coughing less when drinking liquids continuously? I think so! She has the occasional cough. It's frequency is much less than it was before surgery. My thought is that her lungs are clearer, less junky, and becoming free of aspirations. Does that mean that surgery was successful....I would say so!! It is almost scary to say it. I believe it because I notice a difference, but the fear is that I could be wearing rose colored glasses when I make that statement.
The fact is that I am the only one who can make that statement. I am the only one who watches her drink day in and day out. Of course, my hubby could interject his opinion but it is me who knows the drill. So very quietly I say it, if someone asks. In a tiny voice I say, " I think she is coughing less." I'm afraid to scream it from the rooftops in fear that I am wrong.
I trust myself to think that Sloane is coughing less because we know both stitches were intact post surgery, we know that Dr. Rahbar is a specialist like no other in our eyes, and we know the odds of Sloane needing a third surgery to close her cleft tighter were minimal.
If there is one thing I know for sure without a doubt.....it is that Sloane is a nosier breather just as predicted because her airway is more narrow. The tiniest trade-off for healthy lungs!
Thursday, May 29, 2014
Two, 2 and 1,2
There are 2! 2 were seen! 2 remain! 2 intact stitches were viewed by Dr. Rahbar in Sloane's airway yesterday!!! Exactly what we wanted.....2!
Sloane is 3 weeks post-op and Tuesday was the day for our airway scope with Dr. Rahbar. I will save everyone the details and just simply say....it did not go well at all. The results could not have been more wonderful. Two stitches STILL intact and healing just the way Dr. Rahbar wanted. A huge sigh of relief could be heard throughout the room and actually across the country as my hubby was down south. Ha!
The scope itself was horrible. I am pretty sure that is the word mammie used to describe it to poppie. It was either horrible or terrible. Either way, quite accurate. Sloane was beyond upset, physically aggressive to protect her orifices from him entering them and inconsolable to the point that Dr. Rahbar left the room for her to calm down in between attempts to scope her.
It was the 2nd attempt with 4 adults holding her down that got the job done. Pretty terrible, pretty horrible. Everyone in the room felt badly when all was said and done. There was no choice. We needed to know.....how had her recovery gone, what kind of healing was happening, and were there 2???
And there are 2! Here is where we stand:
Sloane will not see Dr. Rahbar for 6 months to check-in, follow-up, re-group. His words were clear....carry on as we have...not a problem as I THINK Sloane is coughing less when taking in large gulps of liquids. :) He also wanted us to remember this isn't just a cleft issue anymore...it is also an airway issue. We understand as her airway was made tighter. And yes, I do think at times that she is noisier than she had been...usually when she is winded.
We will discontinue her inhaler in a few weeks after her swelling dissipates and any residual secretions have had time to work themselves out. We may bring it back out into rotation for next winter. I'm sure we will discuss at our 6 month check-up.
Sloane collapsed on the ride home which hasn't happened in over a year. She was drained. There was a trip to Toys R Us for a prize ($9.00 baby stroller) and the old faithful cup of watermelon Del's.
One of my dearest friends today said to me...I am so glad this is behind you now. You can enjoy your summer without worrying about any of this.....And that is the truth. I am very relieved our 2nd cleft repair is behind us and looking forward to going back to normal life without an impending surgery looming around us....
Tomorrow is Sloane's last day of her first year of preschool.........OMG!!
Sloane is 3 weeks post-op and Tuesday was the day for our airway scope with Dr. Rahbar. I will save everyone the details and just simply say....it did not go well at all. The results could not have been more wonderful. Two stitches STILL intact and healing just the way Dr. Rahbar wanted. A huge sigh of relief could be heard throughout the room and actually across the country as my hubby was down south. Ha!
The scope itself was horrible. I am pretty sure that is the word mammie used to describe it to poppie. It was either horrible or terrible. Either way, quite accurate. Sloane was beyond upset, physically aggressive to protect her orifices from him entering them and inconsolable to the point that Dr. Rahbar left the room for her to calm down in between attempts to scope her.
It was the 2nd attempt with 4 adults holding her down that got the job done. Pretty terrible, pretty horrible. Everyone in the room felt badly when all was said and done. There was no choice. We needed to know.....how had her recovery gone, what kind of healing was happening, and were there 2???
And there are 2! Here is where we stand:
Sloane will not see Dr. Rahbar for 6 months to check-in, follow-up, re-group. His words were clear....carry on as we have...not a problem as I THINK Sloane is coughing less when taking in large gulps of liquids. :) He also wanted us to remember this isn't just a cleft issue anymore...it is also an airway issue. We understand as her airway was made tighter. And yes, I do think at times that she is noisier than she had been...usually when she is winded.
We will discontinue her inhaler in a few weeks after her swelling dissipates and any residual secretions have had time to work themselves out. We may bring it back out into rotation for next winter. I'm sure we will discuss at our 6 month check-up.
Sloane collapsed on the ride home which hasn't happened in over a year. She was drained. There was a trip to Toys R Us for a prize ($9.00 baby stroller) and the old faithful cup of watermelon Del's.
One of my dearest friends today said to me...I am so glad this is behind you now. You can enjoy your summer without worrying about any of this.....And that is the truth. I am very relieved our 2nd cleft repair is behind us and looking forward to going back to normal life without an impending surgery looming around us....
Tomorrow is Sloane's last day of her first year of preschool.........OMG!!
Wednesday, May 14, 2014
One Week Down
One week after our arrival home from Children's from cleft surgery #2, Sloane went to school today. I was on the fence until I was putting her in time out and she said "Momma, I don't think you should do that. Can't hurt my throat." I can not make this shit up!!! It actually rolls out of her mouth!! Many days, my hubby and I shake our heads. We know we are in for it in years to come. Once she said those words to me, I realized it was time for her to go to school and resume our normal schedule.
Dr. Rahbar had requested a week of recuperation and we had in fact accomplished that. We had no major restrictions on Sloane's diet or liquid intake so all is going swimmingly in that area. He had asked us to limit the water she drank for the first few days....simply because it is the thinnest liquid and therefore the hardest to swallow for her newly lasered and stitched throat! The thinner the liquid, the more troublesome to the swallow of a laryngeal cleft child.
It has not been easy to keep Sloane's activity level or voice on the low side! She is naturally a live wire ready to go! and a loud talker like her momma!! I wish this wasn't the case, but 2 girls in this house are louder than most. I asked her teachers today for quieter play at recess.....and I found out that the sandbox was her choice! Perfect!! Sloane was excited to see her friends and they gave her the warmest welcome!
Many people have been anxious to know, what know.....what happens now that the surgery is done. As far as I know, 2 things are happening.
Beyond those 2 things, I am unsure what approach we are taking. Will there be a MBS (swallow study) to access the results of our 2nd surgery OR will Dr. Rahbar see us in 6 months to hear my day to day mother opinion Or do I dare to think (please let this not even be an option...I am feeling as though putting Sloane under 8 times in less than 4 years is enough for her little body) that he will want to scope Sloane under anesthesia again in months or a year to see what her cleft looks like?????
I am very happy to be back to normal life as the momma. The washing machine is turning, chicken is marinating, the vacuum got some use and the anxiety in the house is at a lull!!
Dr. Rahbar had requested a week of recuperation and we had in fact accomplished that. We had no major restrictions on Sloane's diet or liquid intake so all is going swimmingly in that area. He had asked us to limit the water she drank for the first few days....simply because it is the thinnest liquid and therefore the hardest to swallow for her newly lasered and stitched throat! The thinner the liquid, the more troublesome to the swallow of a laryngeal cleft child.
It has not been easy to keep Sloane's activity level or voice on the low side! She is naturally a live wire ready to go! and a loud talker like her momma!! I wish this wasn't the case, but 2 girls in this house are louder than most. I asked her teachers today for quieter play at recess.....and I found out that the sandbox was her choice! Perfect!! Sloane was excited to see her friends and they gave her the warmest welcome!
Many people have been anxious to know, what know.....what happens now that the surgery is done. As far as I know, 2 things are happening.
- The first being that Sloane will stay on her inhaler for the next month to help with any residual swelling or secretions in her lungs. We will make an appt. with our pulmonologist for mid-June to discuss the plan moving forward.
- We are having our follow-up scope on Tuesday, May 27th. Dr. Rahbar is going to take a look into Sloane's airway to check out his work. I am sure at that appointment we will talk about next steps for Sloane.
Beyond those 2 things, I am unsure what approach we are taking. Will there be a MBS (swallow study) to access the results of our 2nd surgery OR will Dr. Rahbar see us in 6 months to hear my day to day mother opinion Or do I dare to think (please let this not even be an option...I am feeling as though putting Sloane under 8 times in less than 4 years is enough for her little body) that he will want to scope Sloane under anesthesia again in months or a year to see what her cleft looks like?????
I am very happy to be back to normal life as the momma. The washing machine is turning, chicken is marinating, the vacuum got some use and the anxiety in the house is at a lull!!
Tuesday, May 13, 2014
One Eye Open
Sleeping in a hospital isn't sleeping. It is a sequence of closing your eyes and opening them when beeps occurs, when a nurse is jostles you, and when true silence is heard. Sloane and I made it through the first night after surgery with no alarming events. I was brought right back to our NICU nights with the sounds of the beeps around us and the heart-breaking sights.
One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.
My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.
Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.
Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.
We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!
We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!
Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!
Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....
One part of the anticipation of Sloane's surgery was rooted in our hospital stay. The visions at Children's can be heart-breaking. Walking around the ICU hurt. There were families like us, in the past, who were living there for months. Patients' rooms were decorated like bedrooms from home and the family room looked like a kitchen you would see in a dorm room. Food labeled with each person's name. I thought of the NICU...our 7+ weeks of life. We were these families except our child was an infant. No words were needed to explain the whys of where we were. These families had children. Children the age of Sloane give or take a year and they there living in a hospital with their sick child. I could not imagine the conversations between parent and child. Heart-breaking. Our 24 hours in the ICU left us with a sick feeling down to our cores.
My aunt, ti-ti, summed it up best......"Anyone who thinks they have problems, needs to spend an hour here. Then they will see what real problems are." Aint that the truth!! Every time we go to Children's, I am left feeling like....can I please go home with my child and her cleft and never come back here again. In our home, Sloane's cleft was and can be at times life altering. But in the world of illness, disorders, birth defects, and any health concern.....one hour at Children's shows us that Sloane's cleft is manageable in comparison to what some children and their parents face.
Once we opened our eyes officially on Tuesday, Sloane was better.... but standing firm in her refusal to take orally meds. She had fought them off thru Monday night. I didn't think she would be so strong in her convictions in the hospital in front of the doctors and nurses. Luckily we plopped or pushed in some Tylenol suppositories while she was out like a light! haha!!! We were moved to a regular floor and battled through the next few hours of Sloane being not her joyful self. When asked, she said she had no ouchies, but her affect begged to differ.
Come Tuesday night, we unplugged her IVs and took a walk. Sloane couldn't believe it!! She was up and out of her bed. We saw a nurse that had Sloane 3 years ago at her first cleft repair. I remembered her vividly because she encouraged us strongly to let Sloane (9 months) sit in her stroller late at night next to her while she charted so my hubby and I could go to dinner. When I was reminding her of the story, I couldn't actually believe I did that back then. But I had.
We spent most of Tuesday night after mammie, ti-ti, auntie ronda, and Jamie's visits and a balloon delivery from cuzzy......walking. All Sloane wanted to do was walk around now that she knew she could. We walked and we walked. It was nice to Sloane to get some movement. Long after dinner, my hubby headed out and his 2 girls nestled into bed together again and slept. Sloane with 2 eyes shut and me with one eye open!
We got 80% clearance to come home at 4:37am...yes, 4:37am. That's when Dr. Rahbar's staff came in to see Sloane. I couldn't believe that at 4:37am we were in a full discussion about Sloane's progress!! But we were! The doctors had 2 eyes open!!
Wednesday am was LONG........the waiting game! We waited for the A-OK from Dr. Rahbar to come home and then waited into early afternoon to be discharged. While we waited for our car, Sloane said: I can't wait to go home. It's going to be a new day!!!! I had to laugh!!
Once home, Sloane was so excited to see her things and play...play with no running, no jumping, no yelling, no crying, no rough play.....
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