Sip, Swallow, Breath

Yesterday, we colored eggs with my niece. I think it will be a tradition moving forward. The girls were VERY excited to see each other. We try to see each other at least once a week. Yesterday was a fun day. I can't say the eggs are of Martha Stewart quality but they are quite cute. My favorite part of the day was when the girls were holding hands walking around the house. With guidance, of course, as my niece is a new walker and Sloane is a sprinter.  My brother and I are very lucky to have had our daughters close together. Neither my daughter, nor my niece have any other cousins on either side. It is a very special experience. 


My niece is a social drinker. LOL She always has a cup or 2 when we are together. She does handle her JU quiet well. She doesn't start to slur until after her 3rd. I knew Sloane would love to enjoy a cup of JU with her cuzzy so I brought along the sippy cup and Simply Thick. Sloane has acquired a taste for her favorite JU.  Although, she did sip away on the Gerber juice my sister in law had. She wasn't into it as much as her V-8 fusion. Sloane apparently has already decided on her drink of choice. Like her mother, fruity flavors are for her. Strawberry Banana seem to hit the spot best!!   


I know it must seem silly that I had not taken the JU on the road before this week. It does take me time to break away from what is safe. I am not sure if that is about me or if it is a result of this experience. I am sure it has something to do the progress we have made and not wanting to fuck it up in anyway. Life has a certain feeling of normalcy to it and we are enjoying it every day. There are sips, swallows and quiet breaths of yeah because each sip and swallow happens naturally!!!! My hubby and I try not to get to ahead of ourselves in terms of the end of our journey. 


I had dinner with 2 of "my other girl" friends this week. We were discussing Sloane's progress. One of my friends said "I wonder if because Sloane is such a thick head, she is like you, if she will just learn all on her own to swallow perfectly in spite of the cleft sooner than later." This is something that I and many in our circle of trust have wondered before. Sloane is a block head. She is THICK! I have read studies that babies will learn early on in life how to tweak their swallow to become more effective drinkers. Our SLP and I had also discussed it once. I do think Sloane is aware enough to know what works and what doesn't in her world. And maybe as time goes on that will translate over into her swallowing???
Or maybe it already has?? 

Take One For The Road

Many of my friends have children of all ages which is wonderful because I learn so much from all of them. Today we had a play date with a dear friend of mine and her 2 boys. Sloane is sandwiched between them in age. The boys are wonderful to Sloane. She likes to play with them although she does spend lots of time with her hands of her mouth saying "ooohhh" in a oh dear way. Boys are much different than girls in terms of playing. She is very drama-ful! We have no idea where she gets it from. Hahahahahahahah


We had lunch with our friends today. Of course, the boys had sippy cups so Sloane did too!!! I brought the Simply Thick with me and we mixed her up a cup of JU. She sipped away the whole cup like a big girl. Just like her friends!! I was so happy. The sippy cup has hit the road running!!! Sloane takes one for the road now! Ha


I had to take my blueberry to the ped today. Her eyes have been irritated for a few days. We tried a saline wash and refresh eyes drops per a phone call with the ped. Today, though, I couldn't take it one more minute. I needed answers so off we went. I did take my friend, who Sloane thinks is her best-friend, with me for some help. Sloane has HUGE white coat fear and is completely out of control at the drs. office. I welcome an extra set of hands. 


The diagnosis is allergies! My poor child has seasonal environmental allergies. As if a 20 month old needs itchy eyes!?!?! She has rubbed them from big bright white eyes to blood-shot pink slits. We have some new allergy eye drops to drip in twice a day. We are hoping it works sooner than later. Her eyes have made her a bit off her game as my hubby says!

Where Are You???

It is no secret that Sloane is a daddy's little girl. She will do just about anything he asks. With that being said, she adds new words to her vocabulary for him more than she does for me. He says, "Sloane say ??????" and once she is confident enough she says it...whatever the word of the day is. 


Her vocabulary has blossomed incredibly in the last month. It is much easier to understand her and she has moved on to 2 and 3 word phrases. Most days she is a chatterbox. Her chatter is welcome because there was a time when we worried abut her speech and oral development. We were told by Dr. Rahbar many times that her vocal cords, in spite of her cleft being a level 2, looked normal. I remember when we got the diagnosis way back when in the NICU asking over and over again if she would have a voice, talk, or have any speech disabilities. It took a long time to let go of those fears. This is a common worry for parents that have children with clefts as well as children who do not use their airways, throats, and mouth to eat (feeding tubes). You wonder if their muscles and nerves are being developed. Will they be delayed because of the trauma they have gone through. I just emailed with a friend who has a child with a feeding tube about Sloane's speech development in relationship to the feeding tube. Most people in the medical field will immediately ask abut her vocal cords when I say a Laryngeal Cleft. I just had a conversation with a dentist who is a friend of my brothers. It was an easy conversation because he knew about a LC and what type of affects it has on development. The very 1st question he asked was "how are her cords?" We are very happy to be beyond the stage of worry and on to the stage of vocabulary development.  


Back to Little Miss Chatterbox! My hubby in the last few days has gotten Sloane to say "where are you?" She is addicted. She will ask whoever she is talking to where they are. For example if Sloane is on the phone with someone via speaker she will say: Josh, where are you? It has a certain exaggeration to the phrase that makes you laugh. All day everyday for the past week..we have heard it! Well, last night at exactly 3:14am over the monitor we heard:


Momma, where are you? 


I had to burst out laughing!!! My husband went in and settled her back to sleep. Her outburst in the middle of the night made me think of when someone told me that when babies learn a new task they have a hard time sleeping because they want to do it over and over again. I have to say I believe that. Sloane now wants to know where everyone is at all times of the day!!!

Movin' On Up

Last night I was going to blog about how yesterday was a oops free day!! I am sure some of my followers must think that something always goes a bit array in this family, but yesterday proved that is not always true. Sloane and I were out the door by 9, ate & tube fed on the road, napped in the car, drove an hour away, returned home at 4pm, had company for dinner and hit the hay by 10pm without any mishaps!! When I was thinking about blogging about yesterday last night..I thought BORING!!

Then this morning happened and I decided my days of mishaps are much more interesting and probably make others feel pretty great about themselves. HA So once again, we were dressed and ready to shove off by 9am. I had workers at my house today so we were basically evicted and needed all feeding supplies for the day including a sippy cup. Today was the 1st day, I took a sippy cup with me on the road. We were drinking and driving today OR in Sloane's lingo..we were drinking and strolling along today.

I had the day planned in my head. We were heading to the pharmacy first then the mall to return some shoes. I put Sloane in her car seat with  some bunny snacks and off we go. I usually use the drive thru but I needed to get saline drops for Sloane's eye which has a funky spot on it from her rubbing too hard in addition to the prescription. We arrived at the pharmacy which is 2 minutes away and I noticed Sloane's snack was gone.  She couldn't have eaten them all. I pulled her out of the car seat and investigate. Sure enough, there are enough snacks under the cushion of her car seat to feed a family of mice. Every kind of snack: raisins, yogurt melts, fish, crackers, puffs, animal crackers, and granola bites. I want to die!! This is exactly what my brother had been worried about....a mom's car!!! I start shoveling the pile out with my hands and throwing them on the ground. Telling myself that I will vacuum out the seat as soon as we arrive home.  I decide to let Sloane walk in the pharmacy, instead of  being wheeled around bc we are only going to be a few minutes. She was THRILLED!! We held hands, and headed back to see the pharmacist. All was going well, Sloane was re-arranging the candy shelves but I figured that is somewhat acceptable. The pharmacist was LONG-winded. Not ideal when you have a toddler in tow. Sloane has now moved on to the Ace Bandage section and begins handing myself and the pharmacists everything she can in proper "mommy's helper mode". I put an end to the conversation, taking a minute to remind myself that I should have switched pharmacies last month when I wanted to. In the meantime, I see the grimace, I see the squat, and I know. Sloane has decided to christen Rite-Aid with a poop!! This is exactly what I had planned in my head when I envisioned our morning. Sloane already pooped prior to our exit from home and honestly 99% of time only poops at home. Its her thing I guess. Anyhow, after the grimace and squat comes the smell. At this point I have paid and we are on our way towards the door. Sloane is now happy. She is enjoying her freedom and wants to stop in the card aisle. I scoop her up and she leaves a trail of cards behind her. Once outside, I realize that changing her is going to stink (no pun intended..lol) I prefer to change her in the trunk on nice weather days, but today was winter so it was the back seat which kills my back and isn't ideal for a squirming toddler. Keep in mind folks...this is all w/in 10 minutes of leaving the house. I have broken into a sweat changing her diaper, Sloane is pissed off and we have a whole day ahead of us. Back into the car seat she goes with screams and I am in my driver's seat praying for a trash can near by. Back on the road, en route to the mall, I realize I do not have the shoes to return. WTF!! We turn around, head back home and I look at the clock and it has only been 30 minutes!!

Once at the mall, I look back and Sloane is out like a light. This morning's activities made her tired too. I decide to wake her up which I never do but it was too early for a long nap and too cold to hang out in the car. I knew I had the magic once I showed her the JU. She grabbed it and  held her JU proud as a peacock as we strolled from store to store!!

Well we're movin on up
To sipping outside
To a deluxe cup of JU in the sky
Movin on up
To sipping outside
We finally got a swallow to slide by

Realistically, BIG

Our appointment with Dr. Rahbar is in 10 days. I am not living day to day waiting for this appointment as I have in the past with our appointments with him. Dr. Rahbar is an exceptional doctor with a wonderful bedside manner. I trust him completely and his philosophy of one step at time has proven itself. I am at a point that I realize that Dr. Rahbar is not going to be able to say or do something profound to make our journey speed up anymore. In the past, I would wait and wait to get to our appointments and then hang on his every word waiting for him to declare a finish line. I am not in that same place anymore. I guess you could say I am more realistic. 

My husband is taking the day off to accompany me, Sloane and mamie to our appointment. He does not make all appointments, but this is one he doesn't want to miss. We were all discussing it tonight at dinner. He and mamie think our appointment next week is going to be a BIG one. I am not sure how it could be??? Yes, we have made progress. Yes, Sloane has remained pneumonia free, Yes, a sippy cup is part of our daily routine. Yes, Sloane has proven to not have any aversions to liquids. But, what does that change??? I think, no I know, Dr. Rahbar is going to be very pleased but I am not expecting anything to change in our course of action. I am not expecting this appointment to be BIG in any way, shape or form. 

I am not being negative. I am thrilled with how far Sloane has come. I am just being realistic. This is a one step at a time birth defect and as long as Sloane stays healthy, I accept that. There was a long time when I frustrated because nothing was progressing. It was actually more than an entire year. From July 20, 2010 to August 23, 2011.....nothing changed. Sloane had her cleft repair, but she continued to aspirate everything on a swallow study except solids. I think that was my breaking point. That was the point when I accepted that this teeny tiny birth defect was going to be hanging around for a long time. In that 13 month period, we had gone thru so much (post: Are We There Yet) and our progress with the cleft was non-existent. 

When I had my shut-down period/soul searching period (that's what I do best when I need to deal with/thru smthg) after that swallow study, I think I changed my approach with our journey. I no longer wanted to fast forward over the days to get to the end. I now wanted to make every day better than the last one sip at a time. 

So am I looking forward to seeing Dr. Rahbar? Yes. Am I looking forward to him scoping Sloane to check her healing? Yes. Am I looking forward to Sloane drinking some JU in front of him? Yes. Am I looking forward to reviewing all the progress we have made? Yes. After all that is said and done, I am looking forward to him saying: keep going, keep thinning, keep up the good work. See you in another 6 months. Realistically, that sounds BIG to me. 

Filler Up

Sloane did not have her JU today. First day in a long time. She wasn't interested in it at all. I placed it in her cup holder on her tricycle and heading out around the neighborhood. She didn't touch it once. I prompted her, took a swig myself, played a teasing game but today the JU was of no interest to Sloane. Instead I hooked her up to water via tube. This worked out well because tonight we went out to dinner with my brother and his family. The 4 of us took a 20 month old and an 11 month old out dinner. And drum roll please.....in my SIL's words "it went swimmingly." The girls were great!! I am sure the patrons in the restaurant were horrified when we walked in, but before the end of our 2 hour stay we received 4 compliments on S2's behavior. 

My niece will be 1 next month. So sad!! She was my baby fix and now she is becoming a big girlie too!!! Pepper, as I will call her, is fantastic. That is the adjective my hubby and I have labeled her with. Pepper is getting too big, too fast as they all do. Now of course, my niece had a sippy cup at dinner as she always does. I mean this is what babies her age have. For me, this is foreign. We have not started to take our sippy cup out with us. Sloane's sipping has happened at home where it is quiet and controlled. I do not think that needs to be the case moving forward, but up until now it felt more safe. Anyhow, my niece has her sippy cup and what does Sloane say: I want JU. I felt horrible. I should have brought the Simply Thick and the sippy cup. I should have packed it in my diaper bag, but honestly I did not even think of it. For here on...I will. Sloane wanted a drink and I couldn't give her one. She quickly got over it when Onnie (auntie) gave her a few sips of water and I ordered her some vanilla ice cream. 

It is hard to adjust to normal. A sippy cup has never been part of the routine for an outing for our family, but from here on it should be. The next time, Sloane says "Filler Up", I will be ready. 

Baby E

When Sloane had EI (early intervention), they made a point on numerous occasions to let me know that Baby Einstein videos are BAD, BAD, BAD. I do not remember exactly why. It had something to do with studies that show that they stimulate children's visual senses too much. I think I tuned, our lovely therapists, out because of my everything in moderation (except french fries) philosophy!! Sloane received OT from EI over a 10 month period until she was discharged because she surpassed their goals. The OT was addressing her feeding skills. The same OT and the charge nurse (they visited us a team) were the 2 who strategically talked to me about the evil Baby Einstein. 


Baby E videos over the past 20 months have been a savior to me when the witching hour is at its best. Sloane loves to watch a video. Baby's First Sounds was her favorite, but now she has moved on to On The Farm. She is glued to it when it is playing. Do I play it everyday? NO! But does Sloane see it maybe 3X a week. YES. 


I do not think Baby E is bad. I do have some questions about the way they are made?? They are SO simply made. It is actually hysterical to watch them. I probably should have researched on line about their negative influences before I wrote this post, but I didn't. As a mom, I think Baby E videos are more educational for Sloane than the cartoons on tv. Today, I think proved it.


While Sloane was watching On the Farm, she yelled "momma, i che (see) apple" and it was! BIG APPLAUDS, SMILES & HUGS. And  1 minute later, she says "momma egg", "momma egg" and it was! BIG APPLAUDS, SMILES & HUGS again. So Baby Einstein, you will be a keeper in our house in moderation. 


We went to the car dealership today for a service call. One of my dear friend's girls love their trips to the dealership. Now, I know why. Sloane loved it. She mingled with the others sitting in the waiting area. 2 colorful new retiree men were chatting it up with us. Sloane was munching on blueberries and goldfish, when she sees one of the men drink from a bottle. Immediately, she is in awe. She has since this countless times but today her eyes are the size of 1/2 dollars. The man says "ill go get her a bottle; they are free." I say, "that's ok. she is all set." He says, "come on mom, give her some water, she can't have water?" I politely say, "she has her sippy cup in the car. she can wait." He says, "water won't stain her." I ignore him now and divert my attention 100% to Sloane. I decided to save this man the embarrassment of explaining why Sloane can't drink water from a water bottle. I am never quite sure if it is worth it??

Whatever It Is

This morning while I was making the bed and watching the Today Show, they had a story on a 3 year old girl who was born with a rare condition that requires her to be on o2 constantly. The story featured her and her service dog who carries the oxygen tanks for her. It was an incredible story.
I cried and cried as I watched it. I felt the story. I felt for this child. I felt for these parents. This little girl was beyond adorable and so happy. The story made me think about our journey and just how fortunate we are with our healthy child. 

http://todayhealth.today.msnbc.msn.com/_news/2012/03/21/10780622-girls-best-friend-is-dog-who-carries-her-oxygen

It also made me reflect on Sloane and her spirit. As I have posted before, Sloane is a very assertive and determined child. Early on in the NICU when I would question her personality, our primary nurse would remind me that neither I, nor my hubby are passive individuals so why would  think our child would be. Sloane is the child who puts up a fight if another child takes something from her that she was playing with. She doesn't easily walk away and move on to a new toy. She is child that already has a bit of terrible two in her; pitching a fit if she wants to do something. Sloane is the child who knows what she wants when she wants it. I KNOW these qualities are ones that will need parental guidance along the way to help turn them into life-long positives. In the meantime, sharing may be challenging for her...LOL


Sloane's spirit is the reason why she has plowed through all the medical experiences she has had over the past 20 months. She is fighter. She is the child who pulled out her NG tube many a time at only days old to let us know, it wasn't exactly her style. Ha! Sloane is active. She is the child that in the future will finish one activity and ask "what's next?" She is the child that stands at the garage door to let me know that we have been home long enough and that she would like a ride. My hubby was home today and he remarked "Sloane, you are demanding during the day!" It is true. He usually sees her for a short time a night when all the chores are done and it is playtime. Call it what you want: spirited, energetic, determined, active, feisty, assertive, spunky, enthusiastic, bubbly....whatever it is........


we are thankful for all of those qualities!!! I am not sure if Sloane wasn't as alert as she is if she would have blossomed as she has in spite of challenges. Children, like Sloane, who have had fight along their short journey need those qualities to plow through, to keep smiling, to meet their milestones, to show everyone around them that they have a say, to become a child not just someone's patient, and to teach their parents that their bold spirit is a gift!!!

A Season Of Almosts

Spring has sprung around here. And I am unprepared! Today, Sloane was walking around the yard with a pink JU moustache (because the JU comes along on our tricycle or stroller rides), her white undershirt, and sneakers that are too small. She looked like a child, that if I passed on the street, I would say "poor thing" about. UNPREPARED!! An order has been placed at Zappos for some new shoes, the spring clothes have been put in the wash and I have given myself a good talking to. 


Sloane has entered this new season as a new child! She ALWAYS wants to be outside. Now, I love the outdoors as well. I love open windows, breezes, windows and nature. My hubby on the other hand, is only happy outdoors on our boat or tractor. He prefers to be in AC. Finally, Sloane and I have something in common. Here is the problem: the outdoors is not baby-proofed. There are constant "almosts" almost falls, almost bumped heads, almost splinters, almost dirt eating, almost tripping....it is a new world!! So I had to give myself a good talking to!! Basically, it was a wake-up lady, you have a toddler now!!


In a matter of 2 seconds today, Sloane tripped and did a belly flop on my MIL's pool cover....the water rose and her buddah belly got wet. 2 seconds was all it took. Let me stop here and say that my MIL has walk-able pool cover that has tension across it. Myself and my MILs significant other were literally walking on Sloane's heels around the yard, she decided to pick up the pace and tripped right over the edge of the pool cover on to the pool cover. I grabbed her in an instant, but the look of shock on all of faces was burnt in. I was right there and 2 seconds was all it took. I dried her off and home we came. The outdoors are not baby-proofed!


I have been thinking about all the what ifs. I do know if the pool cover was another other kind, Sloane would not have been allowed to walk in the yard. I do know if I hadn't been literally on her heels, she would not have been picked up in an instant and then what. I do know that 2 seconds was all it took. I do know that this summer is going to be so hard as my father and my MIL do not have their pools fenced off from the rest of their yards as we do. I do know that was my wake-up call. This happened to my go-to mommy when her daughter was a bit younger than Sloane so I'm not beating myself up to the vomit stage.


Sloane is VERY ACTIVE! She is not a wall-flower and I am happy about that, but it is much easier the manage indoors!!! 

Drippy Cup, Not Sippy Cup

My friend, the one who encouraged me to start blogging months ago, that friend is having a bambino!!! We are so excited for Sloane to have another play mate. She and her hubby came over today to visit us. I handed off my bin of maternity clothes to her. I won't be needing them anytime soon we think??? I love giving things to my friends that I am not using or don't need. I am sure it has something to do with the fact that my basement is close to looking like an episode of the show Hoarders!  On Friday, I gave my pre-baby sundresses to a friend who is going on a sexy vacation. So in 72 hours:
1. I lent out dresses I hope to fit in again this summer (i thought it would have been last summer, but the stress of having a baby with a health issue has caused some of the lbs. to hang around a bit longer than I wished for, i am literally trying to work my ass off to get back into them) Ha! 
2. I lent out maternity clothes that if I need again will make it hard to fit back into #1 again. 
It could turn into a vicious cycle!!!  


While our friends were here, Sloane was wandering around, sipping on the JU like a big shot!! In the midst of playing, she dropped her sippy cup and oh dear! some JU dripped on our living room rug. For me, not a jump up and hustle into the kitchen situation. Now, yes, the JU is a pinky color and the rug is tan but the drips were small. This rug, that I loathe, is getting ripped up soon as we are doing some major remodeling to our house this summer. I know, I know...some of you are thinking...have you lost your minds??? In a way, I guess we have!!! I wasn't overly concerned about saving the rug. My hubby was up and in the kitchen in a split second coming back armored with wet and dry paper towels. He wipes up the mess and puts Sloane's JU on her table. She proceeds to grab it and drop it 2 more times causing the same scene. I am chatting away with our friends, playing is dancing to The Fresh Beats and my hubby in a fast pace heads to the kitchen for cleaning props. All of Sloane's dropping makes me think the JU is making her tipsy!! lol 


Once, the sip, drop, clean-up, is over. My hubby wants to know why a cup would be advertised as spill -proof when it isnt?? Good Question I think. And I think back and do remember that on a few occasions, Sloane's shirt had drips of the JU on it too. So to the OXO TOT company, I say watch out...my hubby may be after you for false advertising!! hahaha


If anyone out there is counting, we are on day 10 of no tube feed plug in for snack time. Sloane has drank 2 oz. of V8 fusion mixed with 2 oz. of water shaken hard with honey consitency Simply Thick out of a sippy cup for 10 days!
AMAZING!!! It is completely dreamy!! This is the longest consistently that Sloane has drank by mouth. Usually in her situation, it is aspiration from drinking consistently that causes pneumonia. As of this minute, Sloane respiratory system does not seem hindered at all :) which COULD mean that she is in fact drinking the honey consistency safely. 


For the 1st time ever, I am going to be bringing a sippy cup to our appt. with Dr. Rahbar next month and I am going to let Sloane dazzle him with her JU!! I always ask Dr. Rahbar "will she ever drink?" and he always says "yes, mom, she will. and soon after she starts, you will be telling her not to drink." 

To Stitch Or Not To Stitch

Have you ever felt like some things just happened to you? Or have said "this only happens to me?" Not the good things, but the odd things? Well, last night was a perfect example of why I sometimes say "only me!". 


My hubby is away so bath time was mine!! A treat for me as he likes to do baths when he is here or just thinks he does a better job. HA. I decided to give Sloane a treat which is a shower. She likes to let the water drip down her back like a spa!! LOL We cover the drain with a towel and have some fun. Once bath time was over, I wrapped Sloane in her towel. 


And here is where it all starts..........My friend, who was visiting, said "is that blood?" Sure enough the towel had blood on it. I was not sure where the blood came from until I laid Sloane down on the changing table. Her index finger was bleeding and by this point she was screaming bloody murder. It was clear that she had cut herself and was in pain. I assume that her finger went into one of the holes in the drain out of curiosity as I was exiting her out of the tub. 


I try to hold pressure on the cut with the towel but Sloane will not have it! She is completely out of control. If you have seen her at a drs. office, it was those antics times 100. My friend tried to calm her down and put pressure on cut as well, but Sloane was not having it for more than 2 seconds. She was failing around and blood was flying everywhere. At this point, we both are a bit nervous because the cut will not stop bleeding and seems to be bleeding more heavily. Neither of us could get a real good look at the cut so I have no idea what we are dealing with. My friend is now cuddling Sloane in her rocker trying to relax her because at this point she is crying so hard that she is choking on her own aspirations of saliva. 


My friend looks a bit pale, but very composed. I am a bit beyond nervous. Sloane's face and arms are covered in blood as are our shirts. My friend, who was just worried when she got one drop of balsamic vinegar on my sweatpants, now has quarter size plops of blood all over my white tee-shirt. I decided to call my MIL to see if she is home. She lives around the corner but isn't home. Once she answers her cell, she listens calmly to my description of the scene and says call 911. Let them come and see if she needs a stitch she says. Almost simultaneously, my friend says "Tarra, I think this is pretty deep." I pick up the phone and dail 911, give my info and then call ti-ti who is down the street having dinner and rationally state: Sloane is bleeding, it wont stop, I called 911, please come. I dont mention it was Sloane's finger. I figure she is a seasoned mom of 2 grown once upon a time hockey players and will make sense of what is happening and gain some order. We are 15 mins. into this experience and Sloane looks like she has gotten into a fight and hasn't calmed down at all. The sight of the blood is not helping either. And so we wait for the emts and titi and I pray PLEASE NO STITCHES!!!


The fire trucks, rescue and police arrive. The scene basically screams out RED ALERT to those passing by. I meet them at the door and give a quick description as to what happened and ask only for one of them to go in her room because I know she will escalate even more when a stranger tries to touch her. Ti-ti arrives seconds later and does seem calm initially but when she sees Sloane and her bloody appearance....she tears up and begins to look concerned as well. By the look of Sloane's face, you would not have known it was her finger. As the EMT tries to take a look at Sloane. Tries being the word here. She basically became violent with him! I decide to hand her over to ti-ti to see if she calms down at all. At this point, ti-ti knows it is her finger. While this transition happens, the police officer asks to speak me. He states that he is here to make sure nothing suspicious is going on...I assume abuse. We go over the story, I walk him into our bathroom, and off he goes. Don't let the door hit you on your way out!!!


Back to Sloane's bedroom. Still screams, still bleeding but it has slowed some. There are 6 firefighters/emts in my kitchen waiting for a plan. The one, who is tending to Sloane, states that there will be no need for a stitch. AMEN!!! The bleeding subsides. We got a great explanation about the capillaries in fingers and how they cause excessive bleeding. I sign some paperwork and the entourage starts leaving. We wash Sloane's unattractive war paint off.  Sloane perks up a bit and says "bye" to each of them as her index finger sticks up in the air. I hope that isnt foreshadowing as to what is to come. My MIL walks in and aside from the looks on our faces and bloodstained shirts, all looks normal. 


Once Sloane falls asleep, I call my hubby across the country and tell him about our evening's events. It is a quick convo. He is a man that runs on facts, not flowerly details. He knows Sloane is fine, so he is fine. A few minutes later I get a text that says: 
2 things. 
1. i miss you both very much. 
2. now i need to change the drain in the shower. 
I laugh. That is my hubby. No drama. 


I, on the other hand, had enough drama for the year! I collapse into bed and Sloane sleeps thru the night without any bleeding. She wakes up and within minutes rips off her band aid because her injured finger is her swiping finger on the iphone! Sloane is a techy and she is pissed that she cant watch videos of herself. She also happens to be a narcissist. I am thrilled the band aid is off because I finally get a good look at this cut/gash/gouge/ and I can not believe a cut this size caused this much blood as well as such a scene. I do not think anyone will believe the amount of blood, the intensity of the scene or how it all played out. I am thankful I have witnesses!! Sloane, as per usual, bounces back in a flash and I am once again saying "only me".

A Sitcom Day

A few things happened today that are worth blogging about but I was unsure of what to focus on:

Should I extensively talk about how my brother and I traded cars today. He is in the car business. When I became pregnant, he said: I hope you are not going to become one of those moms with old french fries in your seats and sippy cups half drank on the floor mats! He sees mom cars a lot in his line of work. Anyway, we traded cars today and today was the day that Sloane decided to shake her snack cup vigorously until every fish and animal cracker flew out of the cup all over my brother's truck. Never has that happened in my car. I had to laugh because I knew my brother was waiting for the day when my car turned into a "mom car" except it was his car today that became a mom car.

Should I discuss with detail how Sloane and I had a play date with one of my dear "other girl" friends. Sloane is all messed up with naps this week so she was not awake for the start of our play date. Therefore, me and my other girl friend met in a parking lot of a park to sit and have coffee while little miss slept. Not exactly an ideal meeting place for us considering we had not seen each other in months. Sloane did arise and had fun exploring the grassy area. We did bubbles, played with the cell phone, ran around and then she found what she really wanted to play with: a super tampon that was in my diaper bag!! Isnt that what all kids play with these days??? She carried it around like it was a fun toy. I guess to her it was!! I am pretty sure my other girl friend is thinking twice about our next play date.

Should I blog about how on the drive back to my brother's shop I had to plug Sloane into a tube feed in the car. Not a huge deal. Do it all the time. Today though, my brother's car did not have a reserve mirror to see Sloane in the car seat. I do not understand how he drives my niece around without one. I LOVE my reserve mirror because I know what Sloane is doing at all times. So I plugged Sloane in and we were on the highway cruising along when I hear beep, beep, beep and then Sloane say ut-oh. I instantly know it is the feeding pump. My heart sinks because I have no idea what has happened. For one crazy second, I think she has dislodged it from her belly. I am moving at speed limit plus and now have to pull over. The second crazy second, I think she has torn the connection piece from the tube and milk is spilling all over my brother's car....imagine OMG!!! I pull way over and jump into the backseat like Magyver to find that Sloane has yanked the tube enough to dislodge it from the pump!!! Easy Fix...and we are off!!! 

Then I decided. I am going to blog about how Sloane works the phone. We were in our car on our way home and Sloane was looking sleepy. It was too late for a nap....so I do whatever I can to keep her awake. At this point, my hubby would interject and say "babe, what do you think is going to happen if she falls asleep. the state of ri is going to give us a ticket or citation for letting our child sleep" lol

I was on my blue tooth chatting away with one of mine and Sloane's friends. She is really my friend, but Sloane thinks she is her best friend or somedays a character right from The Fresh Beat Band. So we are chatting on blue tooth to keep Sloane from napping. I did not know Sloane had my cell from the diaper bag. With her erratic tapping, she switches our friend to handset and proceeds to have a 2:23 min. conversation with her!! All the time, I am yelling "Sloane has my phone; you are on handset now". Sloane ends up tapping her back to blue tooth and we laugh our asses off at how well Sloane has held a clear, animated conversation with the phone right to her year and then we officially hang up. Because again I am on the highway and can not reach Sloane, I ask her for the phone back to which she says Noooooo mommy with a certain draggy noise to the No. Then I notice that she has tapped her way to another phone call.  My dash shows a call but doesn't display the number so I am not clear who she is talking to this time. She has another 2:13 min. convo before that call ends. I did think about pulling over on the highway again, but I had already done that once today and I do not want to press my luck. I am wondering at this point who she is calling, but I am also impressed at how well she is holding her own during the conversation. She is speaking and using her hands to gesture!! lol Her speech has blossomed this month. My contact list is varied so there could be someone on the other end of the line who isn't so thrilled listening to her. There is about 3 minutes of quiet and then she taps her way to another call. At this point I am off the highway and pulling a Macgvyer move again to the backseat. Grab my phone to see who she has called. My brother's shop and our baby-sitter's office line....2 people who would have been amused by the banter of a 20 month old! Once I am back in the driver's seat (factually and figuratively), I call my brother and his secretary says yes, in fact, she had a nice conversation with Sloane!! My babysitter is going to have a voicemail from Sloane in the morning as she had already left the office. 

Today was a day that could have been the story line for a sitcom!!

Filled To The Brim

This blog has proved to be a great vehicle of speech. I do not have to tell stories over and over again. Many people in our circle of trust have signed up to have the blog emailed to them so they are getting our cleft/family news real time. I am thinking of signing up others in our circle (watch out brother bear!!!) so they get the emails too and I do not have to answer any questions. HA It has always been easier for me to write things down to explain them clearly and I think it is easier for others to read info in print rather than to hear them.

I had dinner for some friends tonight. I think I made it clear in past posts that I am not a domestic diva. It took me 3 hours to prepare for a dinner for 4. One friend is a chef so I am sure you understand my pain staking preparation. There was one smoke alarm alert and one spill of boiling water....not bad considering! Dinner was quite yummy and Sloane had a blast playing. I have just settled down with a glass of wine to relax. Something I do not usually do, but I am throwing caution to the wind, living dangerously, and going crazy! Whoooo Hooooo!

I gave my mickey button tutorial tonight. One auntie asked how long do we have to put the new button in before the track will start to close. I took the conservative approach and said 4 hours....to which she said: well, you never go that far away so you will be close enough to re-insert it yourself. lol So much for a weekend getaway!

I made an appointment with the nutrition clinic at Children's Hospital today for next month. The thought behind it is that because MAYBE if Sloane continues to eat such a wide variety of solid food, she could MAYBE be taken down to 2 tube feeds of milk a day. She currently has 3 tube feeds of milk. This is all an assumption based on the information we received for our SLP. I am all for it if it is safe for Sloane. If you have never had a child with a feeding tube, you can not understand how hard it is to manage food intake. There is always a little voice in your head making you question whether or not you are feeding your child too much. 

It is a normal reaction to stop eating when you are full. If you are me and there is a plate of french fries in front you..there is no reaction to stop at all. Ha!! Anyhow, because Sloane's tube feed happens simultaneously as she oral feeds...the worry is that she will eat, fill her belly and not want any more food EXCEPT the tube feed usually runs after she has stopped eating so her full belly gets even more full. That is when the worry occurs.....we start to think that she will be overfed, get too full and then vomit. This has happened to me once. It is scary. It is like my baby is literally filled up to the brim and food starts pouring out her mouth. There were also been times when Sloane would scream during her feeds and we would immediately shut the feed off because we would think her belly was hurting from too much food. The fears have lessened as Sloane has grown, but they are always in the back of your head.

I know the worry of over feeding her is common for tube fed children because I have discussed it with other families. There really isnt anyone in charge of managing how much a child on a tube eats other than the parent. There is a formula to how much and how fast the belly can hold liquids via tube in relationship to the age/weight/size of the child, but once a child starts eating by mouth while the tube is running it gets tricky. For us, it has now gotten even tricker because once Sloane has eaten by mouth and while the tube in running, she will request JU. And i think, can this all fit in her belly??? It can be a game of trail and error. It can be very hard to navigate through it all. It isn't a thing that you testing different formulas with, it is your child.

Bye Bye & Hello

We are gearing up tonight for 4 days without Sloane's daddy. He is off for a business trip and we will be missed. The days and nights can get very long. When he is away, the motherlessness is a bit more exasperated. In my world of voices, I see it as if you do not have a husband around, you have a mother to step up in his place. Not having a hubby around or a mother can feel a bit lonely. I do try to fill my time without his company so the days go by quicker. My friends and family always try to step up to the plate, but they all have their own families. As well is the fact, that when your hubby travels frequently for work, it loses its novelty. We are used to it here in our home. I have one of those husbands who is hands on when he is home. Maybe in someone else's opinion too hands on, but not in mine :) When he is with Sloane, he is on! Most nights he has her company for an hour and half. He gives 99.9% of all baths and puts her to bed every night if he is here. He is a great daaadddddyyyyyy!! It will be interesting to see how Sloane reacts to his vanishing act this week. 


This week, Sloane has play dates with her friends. I want her to grow up building relationships with other children and learn from her friends. My brother and I have joked that Sloane and her cuzzy S will be best friends, because we will force them to be!!! Ha I have all kinds of friends and each one of them has taught me at least one thing. There are old friends, new friends, lifelong friends, go to friends, older friends, younger friends, married friends, single friends, remarried friends, friends with children, friends without children, single parent by choice friends, single parent as a result of tragedy friends, white picket fence friends, stay at home mom friends, working mom friends, widower friends, same sex couple friends, work friends, college friends, home friends, kindred spirit friends, brutally honest friends, couple friends....all kind of friends!! Friendship is something I hold very deep in my heart. My friends are the people that share in our lives. Along this journey, some of our friends have made Sloane and her cleft a top priority in their lives and that has blown us away. We have friends who write all of her doctor's appointments on their personal calendars so they could keep track of her progress. It has been incredible what people have done for our daughter. Along the way, we have also lost friends. For whatever the reason, some of our friends didn't know how to handle talking about, asking about, or even caring about Sloane's medical issue. There may have been some who didn't like how we handled the shock/unexpectedness of Sloane's cleft in regards to our friendships and the outside world. Losing relationships has been very hard at times, but we have moved on.  Our child and her needs come before anything else in life. We do think that the energy and unity of our friends has given us even more strength in thru this journey. I hope that Sloane grows her own diverse bouquet of friends for life. 

Let's review what new things my daughter did today:

1. She climbed up on her bookshelf and turned her humidifier on herself

2. She took my green tea out of the cup holder on the stroller while I wasn't looking and tried to drink it

3. Put her hands in the toilet for fun

4. Took the child proof lock off the household cleaner's cabinet

Bye Bye....infant!! Hello...toddler!! 

To the above list, I am sure some of "my friends" will be emailing all their chid proofing tips!! 

Plop Goes The Button!!!!

You know how every one's house has a certain scent and every one's house has a certain level of order to it, our house has both of those things and a certain level of surprise too. Yesterday, around 4pm, I was chatting on the phone with Sloane's ti-ti and Sloane ran up to me pulled up her shirt and started playfully touching her mickey button. So, I put my call on hold and began the ritual of kissing the mickey button all up! Saying "ohh, I love your button! your button is so pretty! let me kiss that button" and Sloane giggled away. Ti-ti patiently waited on the line. As Sloane wiggled her away away from my kisses with a smile, her button slipped out of her belly and plopped on the floor! YUP folks!! These are the type of things that happen at our house. We love the element of surprise on a Saturday afternoon!!


Sloane kept walking, I picked up the deflated button perplexed, told my aunt that Sloane's button fell out & hung up, scooped Sloane up, peeked at her hole in her belly for any tramua, and then calmly made our way to her changing table. Sloane is happy as a calm. This is a regular series of events in our home. This has happened before. We also have had inflated buttons get pulled out which isnt such a calm event for anyone. I always have 2 mickey buttons here...shhhhhh dont tell our insurance company. I worry that something could happen to my spare after I insert it and then we would have to go to the ER for another one. Not exactly our idea of a family trip. 


Once on the changing table, I give Sloane's belly a quick rinse. Gastric juices do not always smell like roses!! Lube up the new button. Draw 5 mls of water into my syringe. Insert the button. Blow up the balloon with the 5 mls. Kiss the button for good measure one more time. Place Sloane on the floor and she is off!! Call my aunt back and start the convo after a hello with "That was odd!"Like I said a normal series of events in our house. 


Once, I have some time. I investigate the button. I fill in with water and immediately see it had a hole so it empty its 5 mls in Sloane's belly before plopping out. Sometimes, buttons just get old and their inflated area/balloon tears. I decide not to toss this button. I am going to use it as a teaching tool. When I was in the classroom, we would say "embrace the teachable moments"...well, I am going too. I think it is a good idea to show everyone the button and review a good plan of action if they are ever faced with a button plopping out. I have heard from so many members in our circle of trust that they would die if the button came out on their watch. The truth is it can happen to anyone and it is not that scary. It sounds it, but it isn't...especially when the balloon deflated before sliding out because Sloane feels no pain. If the button's balloon is inflated then there are screams. Picture your stud earring sliding through your earring hole. I am sure people imagine that you can see right into Sloane's belly once the button is out, but that's not true. I know people think that when you re-insert it, it might go in the wrong place, but after the track is established that can't happen either. 


It has taken 19+ months to get to a point where I can give directions for inserting a mickey button as clearly as making a PBJ sandwich. The truth is Sloane's button got ripped out the 1st time on my watch while my hubby was away on business and it was not a calm event at all. Sloane was in pain, I was nervous, and a bit timid. I walked myself through the procedure, reinserted a button and then it became second nature. The 2nd time was on my hubby's watch and that button too got torn out. He had a similar experience as me, but somewhere along the procedure he decided to boil the button quickly before re-inserting it for sanitation purposes!! When our surgeon, who we LOVE, heard this she laughed her ass off. She knows my hubby well enough to not have been shocked. She reminded him that the mickey button is inserted into the least sanitary place on Sloane's body and that next time boiling is not necessary. Hahahaha 
Like I said a normal series of events in our home. 

Quicker Than Most

I just emailed my new LC mom/friend to start sharing our stories while Sloane is eating breakfast.

That would be a breakfast of:
1 container of peach yo baby yogurt,
1 over easy egg topped with a piece of cheese,
1/2 of a mini whole wheat bagel adorned with cream cheese
6 strawberries
while being plugged in to 5 oz. of milk. Topped off with a few swigs of her JU.

My hubby and I do not know where she puts it!!!

I wanted to post that the LC mom's daughter's cleft was not discovered until she was 9 months old. I can not imagine. Her story is what I have read about...months and months of illness in the hospital before a diagnosis. This morning I feel blessed with how our journey began. I do believe my constant complaining to every medical professional we saw in the 36 hours about Sloane's blue/dusky episodes, accompanied with the fact that Sloane's cleft was a big one.....level 2 inching up on a 3 made our diagnosis come quicker than it does for others. For the parents that lived an emotional roller-coaster for months of seeing their child sick...my heart feels for you.

Mine, Starbucks, Sherbet

So a wonderful thing happened today....a laryngeal cleft mom contacted me to share our stories!! Yahoo! I have never been big on social networking. My hubby and I are not fans of Facebook, we do not like putting pictures of Sloane on the web and youtube videos of her are a big no-no but after today's development...I love blogging as social networking! I hope A Sip Of Heaven finds many more LC moms.  I am beyond excited to commiserate with my new LC friend/mom. 


We had a busy 2 days doing I do not know what. Oh, yes I do. Sloane and I spent some time arguing through her new word. NO!! And then just as we were settling in with this development in her vocabulary, a strange thing happened....she started using the word MINE! NO and MINE within 48 hours. There should be a law against it. It has been very cute because it is novel. Im sure in about one week I will not be saying the same thing. The only thing Sloane isnt saying NO to is her JU and everything is now MINE.


Yesterday, we did an errand for poppie and it happened again. An elderly woman said "what a cute little boy!" I replied that it was a she. And the old geezer said "then why do you have a boy's haircut on her?" Hahaha. The woman in the office working where we were burst out laughing. I replied that my daughter's hair hasn't come in yet. The lady said "well, she is cute anyhow." Can you stand it??? Sloane had on bell bottom jeans, white uggs, and a hot pink vest with hearts on it. I had to laugh on our way back to the car. 


Here is my advertisement for the week. Usually I am bragging about Trader Joe's. My cousin says I should be on their commercial like the ladies who like Christmas Shoppe. Well, move over Trader Joe's, this week I love Starbucks. I was in a pinch yesterday because I didn't have the feeding tube with me. I think it is ridiculous that I haven't learned. I  think my errands will be quicker than they are and leave the tube at home. WHY?? This isn't my first day at the rodeo???  Anyways, Sloane was getting drowsy. Here's the issue...an empty belly = a short nap so I needed something quick to fill my baby up. I pulled up to the Starbucks drive-thru and purchased a Protein Box. It is like Sloane's favorites wrapped up in one. Hard boiled eggs, cheese, apple slices, grapes and a dollop of peanut butter. Heaven to Sloane and a savior to mom!! Not exactly an ideal substitute for lunch at home, but Starbucks now has my go-to in a quick pinch for Sloane. 


Yesterday, was my mom's birthday. Normally, I head to the cemetery and do my thing, but this year I decided to celebrate with my daughter outside in the fresh air. I think if my mom were here, it is exactly how she would have wanted to spend the day. Outside playing with her granddaughter/s. 
My mother's birthday isn't a national holiday for everyone. It is a day that I do not have to share with anyone. My brother and I chat about it but we even have our own thoughts about it. My aunt did suggest a dinner of sushi last night to give this mommy a time-out in honor of her mom. A gesture that touched my heart and company that warmed it. 


Today was the dreaded annual OB/GYN appointment. Love my dr, but she was one hour behind today. What a pain in the ass!I had no worries with Sloane's babysitter, but I kept feeling incredibly guilty because I advertised I would be home in an hour but in fact I was 2 1/2.  It is the worst feeling. Lately, things/lines/cashiers are taking too long, I want to scream out. Hello, I have a toddler with me/or at home......hurry the fuck up!!! 


Sloane does NOTHING slowly. She is in constant motion when she is awake. Until tonight, we saw something that Sloane did ever so slowly. She was concentrating so hard on her eye hand coordination, there wasn't a peep, not a sound for about 10 minutes. In toddler time, that is like 3 hours. What was it? What made Sloane resemble a neurosurgeon??? A dish of raspberry sherbet!!!! She couldn't get enough....constant hand to mouth precision..not a drip, not a spill, not a drop left in the dish or on the spoon.   
My daughter is a girl after my own heart!! 

A Hat Trick

I am not clear what exactly a hat trick is but I do remember my little cousin, who is actually turing 30 this year, saying something about 3 things happening at once. That is precisely what happened at swallowing therapy today. Sloane drank, ate blueberries and pooped all at the same time for our SLP, Courtney! What can I say, my child is a multi-tasker!!! LOL

Courtney was VERY pleased with her drinking. It was Sloane's cocktail of choice. 2oz of juice w 2oz. of water mixed with honey consistency thickener. Sloane showed no obvious signs of aspiration today. I assumed we would be moving onto nectar consistency if honey consistency was safe, but that was not correct. I was skipping lots of steps. We will be thinning out the liquids a bit more for the next month. SLOW & STEADY is the motto. We are moving from 4oz. on to 4 1/2 oz. of liquid to one packet of thickener.  This will thin out the liquid a bit more and we are going try to get Sloane to drink milk with the thickener. Courtney was not surprised that Sloane isnt bellying up to our bar for milk. It is usually at this age that toddlers stop wanting milk. When we see Dr. Rahbar next month, we can all talk about the progress thus far and future plans in terms of thinning out liquids. 

Courtney is not convinced that Sloane's 2 experiences with croup this winter are not related to her cleft. Croup is a broad diagnosis and may be related to aspiration. Not great news, but not horrible either. Dr. Rahbar will weigh in his thoughts next month on the croup and its relationship to the cleft and aspiration, if any. Although Courtney did say, she thinks Dr. Rahbar will say that Sloane has been healthy enough to continue drinking thickened liquids.

There was not a swallow study today. Swallow studies are done in the hospital as an x-ray. I asked Courtney today and her assumption is that there will not be another swallow study anytime soon. Music to my ears!! After our last experience in August 2011, I have decided that I am going to use Sloane as my guide to what she can and can not eat/drink safely. Swallow studies can be to sensitive in their results. I am hoping Dr. Rahbar concurs and we wait a while before putting Sloane under the magnifying glass. 

Courtney thought Sloane looked great and was impressed with her feeding skills in spite of everything. Many kids with tubes start to rely on them and do not want to oral feed.  I believe she called Sloane a "foodie" and then said it is so helpful that she is obviously surrounded by foodies. I had to laugh!! Since, grammie and I were already talking about Easter Brunch this am. Foodies we are!! 

Today was a good day! But a long day. We were in the car by 8am on our way and not home until 4pm. There were some pit-stops along the way, but nevertheless Sloane was sitting all day. It is exhausting. When I get home, my first goal is playing with Sloane, then thinking about our day, and lastly talking. Talking for me is usually non-stop but after medical type day I need time to recharge. I usually cant say anything verbally other than "Sloane's appt. went ????" I am hoping this blog helps fill in the blanks for those who want to know the details. Our days heading up to Boston can be draining physically, mentally and emotionally even when they are good days like today. I am very thankful for all the amazing progress we have made, but I would be lying if I didnt say that I also am sad at times that we have to spend days like this. Other children enjoyed the beautiful weather today, my child couldn't. These are the days that I feel alone in this journey even with my wing-woman sitting right next to me. These are the days that you hear "I have a child with a birth defect" playing over and over in your head. These are the days that I spend a few extra minutes loving up Sloane.

Last year at this exact time, I was curled up in an ICU crib with Sloane trying to keep her calm. My hubby was sitting aside that crib trying to keep me calm. Sloane was recovering from her bronch, I was recovering from putting my child through anesthesia again, and my hubby was recovering from seeing his girls out of sorts. I remember it vividly. We, as a family, have come so far!

As a side note, Sloane started using the word NO today. And to that I say, let the games begin!!! 

March For Babies

Every day, thousands of babies are born too soon, too small and often with unexpected health concerns. Although Sloane Jacqueline was not born prematurely, she was born with an unexpected health surprise. As a result of Sloane's laryngeal cleft, we "lived" in the Woman & Infants Hospital NICU for 7 weeks. Being a parent of a newborn in the NICU is an experience like no other. Although our time calling the NICU "home" was upsetting, it was also comfortable and beyond supportive. We know this is not only because of Sloane's extraordinary care by her nurses and doctors, but also because of the March of Dimes.

TEAM SLOANE 2010 is walking in the March for Babies on Saturday, April 28^th at Colt State Park at 10am.


We want to support the March of Dimes for future babies to ensure they are given the same wonderful care Sloane was given in the NICU. Come walk with us! If you can't walk with TEAM SLOANE, please consider helping the March of Dimes by donating. Your gift will fund March of Dimes research and programs that help moms have full-term pregnancies and babies begin healthy lives.  It will also be used to bring comfort and information to families with a baby in the newborn intensive care unit


Use this link to take you to our TEAM SLOANE 2010 page!

http://www.marchforbabies.org/s_team_page.asp?SeId=1741152&si=

A Ju Monster

Sloane has been doing VERY well drinking her thickened juice. We are heading to the swallowing clinic tomorrow for our last appointment of swallowing therapy before we see Dr. Rahbar next month. The plan was if Sloane did well with honey consistency thickener we could MAYBE try nectar consistency. Nectar consistency is the thickness of a drinkable yogurt drink. We will see what Courtney, our SLP thinks about Sloane's progress tomorrow and if we can progress with introducing her to thinner liquids. Because many times, Sloane does not drink in front of Courtney for some reason....I emailed Courtney a few videos over the last few weeks of Sloane drinking. It can be very difficult when she refuses liquids during therapy. I get all sweaty and nervous because I want Courtney to see her progress and grammie (our wingwoman on all drs. appts.) becomes Sloane's cheerleader and then spokesperson. Grammie (aka mamie) makes sure she tells Courtney exactly what Sloane can and can not do. It is very sweet. I do hope tomorrow goes well, but Sloane is in charge. CLEARLY!! 


So there is a monster in our house. The JU (jew) monster. Sloane has begun standing at the refrigerator yelling for ju at all times of the day. I know what she is looking for...2oz. of strawberry/banana V8 fusion mixed with 2oz. of water shaken straight up with one packet of honey consistency Simply Thick. She is up to 2 cups a day! That's her legal limit! Hahahaha The JU monster appeared on Saturday and has been in rare form all week. Today, she wandered into my bedroom gulping. I looked away for a moment and the sippy cup vanished in thin air. No where to be found. I looked everywhere. After taking a break to make the bed, I pull the sheets up and pulp I hear. I think realize that the JU monster put her sippy cup of red sticky juice in between my foot board and brand new gorgeous white comforter that I have waited 5 years to get. A perfect bar height for her to rest her drink! Not a perfect place in my opinion. Sloane walks around this house with her JU like she is a big shot!! It is hysterical!! There is a very small, very cute, very assertive JU monster in our house. I hope she rears her pretty little mouth tomorrow at therapy. 


Tonight is the eve of Sloane's bronch at Children's Hospital last year. Tomorrow was the day we would get some answers!! I remember tonight last year. The nerves, the anticipation, the fears, the excitement. So tonight I will say a prayer for all the parents preparing for surgery tomorrow and that their children have as successful recoveries as our JU monster did last year.

Say Yes To The Tube

A friend and I were talking discipline today. When to say NO! and when to distract and keep the party moving. The subject came up about her 2 1/2 niece and how she won't sit down to eat (my friend's rule was to sit at the table with all food).  She told her sister that her niece shouldn't have to sit for 30 mins to eat but should be sitting for 5 to 10. This made me think??? My poor child!! NO wonder why she is kicking me nowadays during at least one feed when I try to plug her in. Sloane has to sit in the highchair for 35 mins at the least 3X a day for her tube feeds. I think in toddler world that is an eternity. Actually in my world, there aren't many things I like to be still for 35 mins either. In my former fabulous self (post:The Other Girl), I had been known to cut a pedi short because I didn't want to sit that long. These days, a day long pedi would be eagerly accepted!!!! I would let someone take 35 minutes on each individual toe! 


The feeding tube does have its positives! I don't want to be all doom and gloom about it. The medical equipment in our house right now could be much more serious and involved. We know that. As for the feeding tube, I never have to worry about Sloane getting dehydrated when she is sick. She can not refuse liquids since we tube them into her. In light of today's chat with my friend, Sloane is obviously learning good table manners because she has been on a strict sitting and eating schedule since birth. Sloane doesn't get to spit out the yucky medicine leaving me to wonder if any got swallowed because they too get pushed thru the tube. Lastly, since I have been known to eat some questionable things in support of good health, I have the ability to push anti-fun foods in liquid form into Sloane without her knowing. Some Jamba Juice wheat grass shots are to come! Just kidding!!!  I did ask the ped if I could put Emergen-C in Sloane's water tube. To which she calmly asked why? I explained that I have faith in it building immune systems. She chuckled and told me I could, but stated she didn't think it is going to build her immune system. My thought is...we will see about that!! The tube has also taught us not to take anything for granted. We and our circle of trust have learned that a healthy child is the greatest gift you can be given.

Hot Topic

Sloane and I saw a neighborhood friend today. She hadn't seen Sloane since before the holidays, so of course she was shocked at how big she had gotten. We were chatting about life and SJ showed her all her new tricks. And then the cleft came up! Like it always does. With many convos about Sloane's progress, the cleft isnt the issue for people, it is the feeding tube. My neighbor said, I heard she is drinking, why does she still have "that thing"?  


I don't think the cleft scares the general public because they can't visually see it and many people do not understand what a laryngeal cleft is. During my dissertation on the cleft (I am very passionate about it), the thickness vs. thinness of liquid always stumps people. I try to simply say that thick foods slide past the cleft and thin liquids slide thru it...causing aspiration into the lungs. And then there is usually a comment such as: but didnt you have the cleft closed? And I take the simple road, rather than getting even more medical about the neuro-muscular discoordination we are left with and just say: yes, but it will take time for Sloane to learn how to swallow liquids. I'm sure the person thinks then in terms of months not years so the odds of us having this same convo again are GOOD! 


Back to the neighbor, "that thing" is the feeding tube.  It is a hot topic for people. The cleft is usually replied to as "her little problem" but the feeding tube has taken on a life of its own. It freaks people out. I understand. It used to freak me out. I am not freaked it anymore, but I am protective of it. For over a year, I dragged an IV tube around my house with a feeding tube hanging off it, before I figure out how to rig the pump to our rolling highchair.  The sight of the IV pole freaked people out even more than the feeding pump I think. The IV pole = sickness = sadness. The look on the UPS man's face or the postal worker when they came to the the door was sadness. And one day, I figured it out. The pump sits on the bottom of the highchair and the feed bag hangs off the back of the seat. VIOLA!!!  I felt completely liberated when I rolled the IV tube into the basement and completely stupid that I hadn't done it before. 


"That Thing" has become completely normal to us and our circle of trust. A friend of mine and I had a convo about how uncomfy it can make people the other day. We decided that if this situation happened to someone else we knew, we would feel terrible for that child and their parents because of the tube. Feeding tubes in babies haven't become "the new black". They still are a bit behind the trend.  Sloane and I have a nightly ritual when she lifts her shirt and I kiss her mickey button telling her how much I love her button. I do not want her to ever be embarrassed of it or afraid of it. She has started to check her baby dolls for their buttons. I am sure if her mickey button is staying for a while, we will have some chats about why her cuzzy doesn't have one since she and her cuzzy  are almost the same age. 


There was a contest a while back looking for the cutest baby with the mickey button. I am pretty sure if I had entered Sloane she would have had a good chance of winning!! She rocks her button. It sits on top of the most beautiful Buddha belly ever!! It also helps that our surgeon was AMAZING so SJ's button has a certain flair. HA One auntie wants to be-dazzle it!! I do wish they came in different colors. 


The feeding tube is taboo in a certain way for people. The general public would be very happy is Sloane didnt have the tube anymore. Our circle of trust understands that the feeding tube stays until Sloane can drink all her liquids in their natural form by mouth. 


Sloane, too, at times, has had it with the feeding tube. She won't let me or my hubby near it to plug her in. She cries and pushes us away. We know it doesn't hurt her, so we assume she doesn't want to be bothered, forced to sit still for 40 minutes, or is asserting herself. As time goes on, we can already see that the mickey button and feeding tube will become a hot topic in our home!!


Sloane learned to make "pucker up" kisses today. Her little noise is yummy. She was kissing her baby dolls up and shhhhing them to be quiet. HaHaHa As I am finishing this post, I am thinking that maybe momma needs a fake mickey button to look just like Sloane so she can kiss mine!! 

White Coats

Why is there so much sitting, waiting and seeing with a laryngeal cleft? It is because aside from a weekly swallow study, chest xray or visit to the doctor from a lung listen which are all completely irrational, there is no way to tell if a child is aspirating other than when pneumonia arrives. Sure, there are the tell tale signs while the drinking process is happening: coughing, gurgling, redness around the eyes, choking. If your child is a silent aspirator, like Sloane can be, than many times those signs do not appear while drinking. So you wait and pray every night that each sip is traveling right into Sloane's belly where it belongs, not slipping thru her cleft into her lungs. Since Novemeber when we started introducing thickened liquids again, we have been taking baby steps so Sloane stays safe. (post: Slow & Steady)


Because I know weekly swallow studies, chest x-rays and doctor visits for a lung listen aren't exactly ideal for Sloane, what do I do? I rely on my ped to keep me sane. We talk A LOT!! HA When I was interviewing peds, I saw 3 different ones who all came recommended by friends. I heard that a ped didn't matter because they didn't do much from a friend with a child without any medical needs. I am pretty sure my ped has earned her medical payments!!! It wasn't until I met my ped that I knew I found a good fit. Days, months and a year later, I know she is the best fit for our family. Once we were home from the NICU, my ped shared with me that she had another child with a laryngeal cleft 4 years earlier. The odds of that are crazy!!! Sad news for the other little girl's family but good news for us. My ped had traveled a journey like this before...she could guide us. To which she has!! Aside from that, my ped understands how scarred we are from our experiences. She accepts all of my red alert phone calls personally (there have been many). And she checks on Sloane's general health just because she knows I need her as sounding board. As my hubby says, "she connects the dots, she gets it." 


Sloane does not have the same admiration for her ped that I do. She has a HUGE white coat fear (I believe that is the cute  name they give it). I would say she is violent towards our ped and any other medical personnel that comes near her. At our last sick visit, it took the 3 of us to hold Sloane still. Like her mother and father, Sloane is scarred. She has had it with doctors, nurses, tests, x-rays, needles, and being touched. Like her ped, she connects the dots, she gets it.