Day Of Events

Today was a day of events! Now, of course, there was a national event...Halloween! But our day started with events long before Sloane slipped on her yellow & black striped tights.

Now, I have written about "the machine" before. Some call her our nanny, but we call her our babysitter. The machine has a real life. She is a corporate girl by day and a bopping (dancing) machine with our daughter at night. Sloane is now concerning herself with what people's jobs are and where people work. She frequently asks the machine or Nanna, as Sloane calls her, what her work is. We started our day of events with a visit to Nanna's work. On the ride there, Sloane was beaming with small zips of "momma, I'm getting a balloon at Nanna's work" drifting to the front seat of my car. Sloane was a huge hit and charmed her way right into the room with treats. Consequently, Sloane came home with 2 balloons, 2 packages of stickers and a stuffed bear. Delighted is a word to describe this event.

We then drove to the dealership to have our oil changed. I happen to know the family that owns the dealership so we are treated a bit nicer than others. What this means is that, we were escorted into a very comfy office to wait while our service was being done. Sounds good, right?? Well it was, right up until Sloane said "momma, poop. I need potty".  Now, as my hubby says, potty training was on hold with the construction. He loves to bust my balls. It wasnt exactly on hold, but it was taking less of a priority. The house is a disaster, there are 3+ random men walking around my house, and we can not stay home all day....so potty training was happening but I wasn't obsessed with it. For whatever reason, Sloane is excelling at potty training during this construction zone. I think the smaller quarters have made it easier for her?? Anyway, back to the dealership. Sloane need the potty. For a split second, I thought of lying and telling her that there was no potty. But instead, I scooped her up in fear that she would stop and poop before we hit the potty. Once we walked the entire dealership to the bathroom because the office we were being treated like luxury in was way away, there was someone in it. So we waited and waited. Nothing was happening while we waited so I assumed it was a false alarm or considering that it was Halloween....a trick!! We finally entered the bathroom and it hit me....WTF....a public bathroom!!! I told Sloane "hands on the head" and feathered the nest if you know what I mean......I scooped up Sloane and dangled her above the toilet. To my amazement, she tinkled. No trick!! And I asked her if she was done. The answer almost knocked me off my crouch. Sloane said "momma, I poop." And, right there, on a public toilet at a car dealership no less, Sloane did poop. It was a first. Shocked is a word to describe this event.

We did some daytime to trick or treating. Which was very fun! On the ride home, I got a call from my friend who had the triplets back in July. 2 of her sons are home from the NICU, but one is still having some trouble eating. The medical team has suggested putting in a gtube/mickey button/feeding tube. My friend wanted to talk about my experience. There was so much to say, so many stories to remember, and the reality that everyone story is different. One thing that I should say is that my friend is sooo calm. It is baffling to me. I was a mess with one baby with a medical issue. My friend has 3 sons....3 babies....3 infants add a feeding tube to that and I cant make sense of it. The only thing I could think of is that when multiples are going to be born, families are prepared for some medical issues to come. And in my case, I was not prepared at all. Reflective is a word to describe this event.

After a 2 hour nap, Sloane did, once again, pull on her yellow & black striped bodysuit and tu-tu to trick or treat. She did great! We saw all our favorite neighbors from our morning walks. Sloane pranced up to their doors with a sweet Trick Or Treat. I was a bit concerned that she tried to enter each of their houses. LOL And when that failed, she at the very least asked each of them what their momma's names were and if they had a dog. Proud is a word to describe this event.

Down, Baby, Down

Sloane has been decreased to a 1/2 packet of Simply Thick to 8 oz of liquids. In my opinion, she is tolerating this consistency. In simple terms, we have decreased from 1 tablespoon of Simply Thick to 1 1/2 teaspoons. Sloane does have a runny nose so it has been a struggle getting her to drink. Right now, the varieties of liquids in my refrigerator could be used to hydrate a small village. I have been trying to keep Sloane's interest level high.

Somedays, I feel like most of my day revolves around how much Sloane is drinking, what she is drinking, and if she is safely tolerating what she is drinking. It becomes all encompassing some days. I spent the first 2 years of Sloane's life obsessed with her nutrition.... how much she could tolerate through the feeding tube, what she was eating safely by mouth, how many mls. of fluids she was taking in daily, and what consistency was safe. Now, that she is a toddler and is developing her taste buds, I take it personally when she doesnt eat of drink. Managing Sloane's daily nutritional intake was my job. When she doesnt drink enough or eat as much as she normally does, I get upset. My hubby says I hover or get all up in her section. He is right, but I cant control it. It translates, in a irrational way to me, that I am failing at my job. I have had a few meltdowns this week.

Sloane is tolerating the decrease in Simply Thick. We were scheduled to see Dr. Rahbar tomorrow, but our appointment has been changed to next Tuesday because of the weather. I am not bothered by this at all. It gives us more time to practice drinking our 1/2 packet of Simply Thick to 8 oz. I am hoping that her cold subsides and she perks up a bit so we can really push all the new fun liquids in our house.

Which brings me back to my fully stocked refrigerator! Thank goodness that our refrigerator is bursting at the seams because as of tomorrow morning it will be the only appliance in our house. YIKES!! Our kitchen is being torn out tomorrow to make space for our new floor plan. Its been all fun and games this past month....we have been without a living room and playroom, but hunkered down just fine in our kitchen space. Now without that space, the 3 of us will be confined to our bedrooms and bathrooms. It is going to be a very long month/s!!! W trust our contractor and his timing so we are hoping for the best. The circle of trust players have opened their homes to us as we move forward in this process but I would to keep Sloane as structured as I can. Im going to take one day at a time... as with the past 2 years it wont be one sip at a time, it is going to be nail at a time!!

I Need To....

What I have noticed over the past few days:

1. Sloane is a not drinking as much as I want her too without prompting. I am not sure why? Is it the fact that it is chiller outside and she is not as thirsty. Is she not interested in the liquids I am offering her? Is she taking ownership over the whats and whens of her drinking? I need to get a larger variety of drinks in our home!

2. We have way too much stuff in our house. If the general public saw how we are living in midst of our house renovation, I think they would die. I need to purge our home!!

3. I am starting to get obsessed with Pinterest. I have no idea how to use it, but I keep pinning things into one random board....its very disorganized.  Many of my pins are about home decor and tips on how to organize your home. It makes me really happy to look at my board every night. I dream about having a house with labeled bins, boxes, and crates everywhere. My board is becoming a bit too much. I need to reorganize my Pinterest board!!!

4. I was suppose to decrease Sloane's Simply Thick down to 1/2 a packet to 8 oz. of liquid yesterday. I didnt do it. There isnt a specific reason why. There are only a list of them. I need to decrease the Simply Thick tomorrow!!!!

5. I havent thought about the fact that we are going to see Dr. Rahbar on Tuesday. It is going to be a big day; a 2nd surgery discussion MAY occur.  Im not sure making the appointment the day before Halloween was the best idea, but it is what it is. I need to spend some time mentally preparing for our visit!!!

Small Moments

I remember people telling me that it is the small moments of parenthood that sometimes amaze you more than the big ones. On our walk yesterday, I had one, actually 2, of those small moments. It was a brisk morning.....almost a bit too brisk to be out so early but I put on my big girl undies, bundled Sloane up and we hit the road.

The first small moment happened early in the walk. A very simple vision to those passing us by, but a very HUGE accomplishment for this family. 

Sloane was drinking a chocolate milk box UNTHICKENED independently on our walk. A very simple vision for anyone outside of our circle of trust. A very special moment for this mom. I cant lie....there was a was the occasional reminder of "little sips", but other than that Sloane handled the milk box herself. I almost cried watching her thru the sunroof of her stroller. I NEVER imagined we could get this far. 

The second small moment happened close to the end of our walk. Sloane and I were in our groove. I had the ipod blearing and Sloane had the iphone's videos buzzing. She had finished her milk so my eyes weren't glued to her thru the plastic window. When I did look down, I noticed my phone was on the call screen with my hubby's name, the speaker box was highlighted and 30 seconds on the time clock. I shut off my ipod and immediately heard my husband's voice. For a moment, I dont understand what is happening and then it hits me!! My hubby called me, Sloane swiped to answer the phone, then put it on speaker and had a 30 second conversation with her father independently. UNBELIEVABLE!!! When I explain to my hubby what has happened, he already knows because Sloane told him we were out walking! 

Professionally Speaking

It is crazy what you can learn from a professional. I am one that usually lets a professional make the call on certain things...actually most things aside from paint colors. I happen to think I am a professional when it comes to paint color choices!! LOL

Our meeting with Kara, the swallowing professional, was very informative on Friday in regards to Simply Thick. Here are so quick notes:

1. The amount of Simply Thick in the packet is only 1 tablespoon. I never measured it, but simply assumed that it was much more. One tablespoon of Simply Thick to 8 ounces of a liquid.

2. Simply Thick comes in a pump container. Just like a big one of shampoo you might see at your hairdressers. It resembles a large hand sanitizer pump container which would not be ideal in our house since we have pump bottles of that in every nook and cranny. I like the packets better because I feel like they are more consistent. Worrying about if everyone is pumping the correct amount would give me more gray hairs.

3. Children's Hospital has revised their protocol on Simply Thick in regards to the recalls. The reality is that Sloane is not in the same danger as preemies and infants under 3 months for NEC, but the long term effects of Simply Thick on any age group have not been researched. Older toddlers and children did experience some gastro illness, but nothing more than abnormal loose bowel movements. I can not at this point recall any that were worrisome. The long term effects are ALWAYS on our minds.

4. Kara did give me other options to use to thicken Sloane's liquids, but most of them would change the texture of her liquids which is concerning. Sloane has come so far on Simply Thick and in a few weeks we MIGHT be rounding the corner....decreasing from 1 packet to a 1/2 of a packet in 8 ounces so I am leery to change anything up at this point in fear that Sloane will refuse the new options.

5. Sloane (after she has drank 8oz. to one packet w/o any issues for 2 weeks) MAYBE able to drink some commercially available nectar consistency liquids like:

Gerber Yogurt Juice

Dannon Drinkable Yogurt

Naked Smoothies

Goya Fruit Nectar

We will try them at home first and see how it goes. I am very interested in Odwalla Smoothies for Kids. I can not find them anywhere and they cant be ordered online. I know that Sloane will love having her very own juice box to hold. I have the circle of trust on the lookout for them.

Is she a swisher?

After 2 years, I finally have my shit together as the mom & driver and made it to mammie's house early enough to give Sloane some time to play before we began the rest of our drive! letting Sloane stretch her legs a bit made a big difference in our morning. Rather than Sloane sitting for almost an hour and half hour straight, we broke up the drive a bit. After 2 years and about 20 + drives to Children's, and I finally have my shit together enough to be early!! That should give everyone a clue to how my life rolls!

Our visit with Kara was a good one on all fronts! Having a professional to facilitate our swallowing journey has changed everything. I entered Kara's office with all my concerns on the tip of my tongue. I had been obsessing about them for over a week. After Sloane charms Kara to get a snack different from the one her mom brought, I open my trap and tell her about the last 2 weeks of aspirations and my opinions in regards to them. While we are talking, Sloane is wandering around the room drinking her ju, then switching it up to chocolate milk and finishing with some chunks of watermelon without a cough, gurgle or choke. Isn't it always the way??? 

Now, Sloane didn't just sip either today. She did her big gulp and swishing trick. Kara asked me if I thought Sloane's swishing was a habit. My answer was no, I don't think so. Honestly, I think it is a result of watching her father do his Listerine antics in the morning. I think it is a goofball move. She swishes her gulps to be a goofy girl and sometimes to tease us a bit. Sloane has this look on her face when she swishes that let you know she is doing something you arent exactly thrilled about! She's a little shit!! I was very proud as a mom NOT when Sloane showed Kara just what a monkey she can be. Kara asked Sloane to swallow her gulp and swish and Sloane shook her head no twice with the sweetest smirk on her face!

When Sloane does the swish, she ends up with too much liquid in her mouth and when she tries to swallow it, she loses control of the liquid and aspirates it. I wasnt excited to hear that swishing can become a habit and not a good one. Kara agrees with my initial hope and "the machine's" thoughts....Kara thinks that Sloane's coughing & aspirations have more to do with volume than consistency. 

Some facts to note that we reviewed today:
1. Dr. Rahbar doesn't become overly concerned with a child's swallowing progress until they become sick. In his opinion, coughing is okay while a child is learning to swallow so he may not be in red alert mode on Oct. 30 because Sloane has been healthy! I knew this but couldnt wrap my head around it.
2. When Sloane has a stuffy nose (like this week), her swallow will be sloppy because she cant breath thru her nose while her mouth is closed. I didnt consider this one myself but it makes perfect sense.
3. Sloane's coughing MAYBE a good thing. If you have been following this blog since the beginning, you will remember that Sloane was a silent aspirator. She aspirated her liquids and didn't react to it. Because of this, we ended up at the Neuro Department of Children's in line for a MRI. It was unclear why Sloane wouldn't physiologically react to an aspiration. The thought was: Does Sloane have a neurological issue affecting her swallow. The MRI's results were NO she doesnt. At this point of our journey, the coughing when Sloane aspirates could be a GOOD sign. Her larynx has woken up and is reacting to the aspirating. Kara said sometimes this is what happens in laryngeal cleft kids. There larynx wakes up and then the child's swallowing progresses. This thought process made me relax instantly.
4. Children Sloane's age without laryngeal clefts are able to swallow big gulps and swishes without aspirating. Sloane will need to learn to control her big gulps the same way she has learned to swallow liquids. My question is how?
5. Sloane may be swishing because her liquids are getting thinner and she likes that she can move them around in her mouth. Yes!! This could be it. The thinner the better in my child's eyes. 

The schedule is: 8 oz to one packet of Simply Thick for 2 weeks! And then we are on decreasing to a 1/2 packet to 8 oz. until we see the myth, the legend on the 30th. We are thinking that a follow-up MBI(swallow study) will be scheduled after this visit. 

Kara and I did discuss Simply Thick and all the hype surrounding it lately. To be continued.........

Normal

Yesterday, we had lunch with Sloane's Godmother and "G". Nothing special about that, it is a frequent occurrence. But, yesterday did mark a 2nd anniversary of lunch in this family. And we took a moment to laugh about how things have changed in 2 years.

When Sloane came home from the NICU at 8 weeks old, I didn't take her anywhere for days...actually for a month. It just seemed safer to be at home with her. I was scared to leave the house. I could control the germs, the elements, the feeding tube schedule, and Sloane's every move. I didn't even think about going out. I was fine. Sloane was fine. And it worked.

That was all well and good until Columbus Day 2010. The aunties are teachers too and had the day off so they plotted a plan to get Sloane and I out of the house. They thought it would be fun to do some outdoor shopping in the fresh air and have lunch. I rejected the idea immediately stating all the reasons why it wouldn't work.
There was the one hour feeding tube feed, the reflux that became aspiration because of the cleft, the germs floating around, and the fears. I knew as I was explaining my decline of the invite that I was going to be dragged to go anyhow. 30 minutes later we were on our way to our 1st day out!

My hubby, too, had the same concerns as I had in regards to taking Sloane out. So when he heard the plan, he decided to leave work early and join us for lunch or rather "get his arms around situation". I remember that day well. It all went swimmingly if you leave out the part that Sloane did a HUGE poop and I did not have enough wipes or a change of clothes. LOL Before you judge me, we never left the house and Sloane's poop was completely under control in the house.

I remember parking Sloane's stroller on the side of the table and hooking her up to the feeding tube for the 1st time in public. I can still see the scene in my head. There was a feeling of accomplishment in my heart on the ride home. I certainly didn't start going out for lunch after that day but I was more open to the idea.

After 2 years, lunch is a normal occurrence these days. Not only lunch, but a sippy cup in Sloane's hand while she eats. 2 years ago, I never thought that would happen!! Lunch is so normal that yesterday, while I was trying to help Sloane pour her marinara sauce on her pasta, she gently pushed my hand away and said "no momma, eat your own salad." My daughter, the child I sheltered for months and basically kept in the bubble of our home, is now up on the normal social etiquette of lunch!

Trump Card

Sloane did have some episodes of coughing over the past few days. Sloane is not coughing with every sip....she is having a coughing period maybe once or twice a day. As I said in my last post, it isn't clear if Sloane is having a problem with the consistency (7oz. to one packet of nectar) OR the volume in the sip. I have watched her every sip over the past few days as did "the machine" on Saturday night. We both are leaning towards a volume issue not a consistency issue. Sloane is coughing when she has a large sip in her mouth that she has swished around and then tried to swallow in a gulp.

My hubby and I spent much of Saturday discussing this as Sloane performed her coughing for him Friday night while I was not home. Now, my hubby has a different approach to life than I have. He looks and thinks of things differently than I do. So, when he started to suggest that we might have a problem on our hands I started getting a sick feeling in my gut. The problem wasn't the problem....the solution to it would be the real problem. My hubby was suggesting that Dr. Rahbar may in fact have to go back in and fine tune Sloane's cleft repair surgery. A 2nd surgery!  His question was do 2 year olds without laryngeal clefts have trouble with big sips? It doesn't seem normal that Sloane will not be able to  take big sips for the rest of her life.

I decide to share our concerns with mammie on Saturday night....after all, she is my wing woman. Mammie is the only other person who hears Sloane's story from the medical point of view first hand. Many times, she absorbs the information better than I do exactly why I take her with me. When we discuss Sloane's LC, its a very factual and realistic conversation. As I shared our thoughts, Mammie confirmed that she, too, is thinking Sloane may need a 2nd surgery. Her reasons were similar to my hubby's but she also had a trump card. Mammie thinks that the myth, the legend Dr. Rahbar was trying to get me ready that Sloane would be having a 2nd surgery on our last visit.

I was silent for a moment and then thought.....she was right. That was how Dr. Rahbar operated (no pun intended). He is a straight forward in a very kind, gentle manner. He lays the framework in a way that he tells you exactly what's going to happen before it does. I thought about our conversation. He scoped Sloane and when he was done...he said:

• let's up the ante and push her hard until the end of October, 
• if she gets stuck on a consistency, lets give her a swallow study,
• based on those results, I may go in and do a 2nd surgery

So now, we decide. Should I up her to 8oz to one packet tomorrow as the schedule says to and see what happens? Or should I stay at 7oz until we see Cara on Friday? I would like to tell you that we have decided, but I cant. I have spent the last 24 hours with a sick feeling in my gut.  I cant even think about Sloane needing a 2nd surgery and all that comes with it emotionally. Sloane has come so far, as we have...a 2nd surgery changes all that. I immediately begin to unravel. My hubby reminds me that we are 80% there....its only a fine tuning to get us to the finish line...and that I shouldn't get nervous unless he does. This is all factual and true. I, on the other hand, cant be rational. 

Hawk Eyes

So I mentioned to mammie on Monday that I was thinking of moving Sloane up to 8 oz. to one packet earlier than it is scheduled to happen. I may have spoke to soon. There has been some coughing the past 2 days. I can't get a handle on why yet. As I am sure you assume, I do not watch every sip that Sloane's takes from her sippy/straw cup. If she is drinking from another vessel then I am hawk eyes, but her sippy/straw cup has given her some freedom.

The coughing has happened a few times a day and because I am not right there, I can not tell if it is a consistency issue or a volume issue. I have decided to keep everything the same until the scheduled move up day Monday. My focus now will be to watch every sip so I can make a determination. If she continues with the coughing, I THINK I will leave her at 7 oz. until swallowing therapy on Friday so I can get Cara's input. If it subsides, then we will move on to 8 oz. on Monday.

I am typing this during nap time which is laundry time for me. I would just let to tell the cyber world that I am sick and tired of food stains on Sloane's clothes. I do the cycle of spray, wash, re-spray, re-wash, soak and re-wash again on some items. It is ridiculous!! There are some days that a big drum of clothes soaking in Oxy Clean water is in my kitchen sink like a witch's brew. Talk about annoying!!

Why am I on this rant today??? Well, yesterday, Sloane wore some brand new very cute neon yellow skinny jeans with a tunic to her nursery school visit (another post for another day...but spoiler alert: SO FUN) and she dripped some watermelon on the leg of the jeans near her ankle. Certainly not a spot that a bib would cover, maybe a mu-mu, but not a bib!!! So as soon as they are off her, I spray them and throw them in the wash. Let's be clear it was only watermelon juice!!! I take them out of the dryer today and the freakin' spot is still there!!! This would have been acceptable to me if I let the stain settle in for days or if I didn't spray them with a spot cleaner first!!

The pile of clothes to be spot cleaned on top of my dryer keeps growing! And I don't know how to fix the problem. I am hawk eyes before I toss any of her clothes in the washer. Examining them in the bright light, looking for a drip or smear. Last week, I actually changed Sloane in crummy clothes for dinner time. Not before, I told my hubby that I was going to invent a zip up comfy tunic for her to wear during eating times!! Like an eating smock instead of an art smock. Another invention thought that I will do nothing with!!

I was already obsessed with laundry. My hubby had a mini intervention with me once. He instituted that Sundays was a laundry free day. It drove me crazy. I like the bin to be empty at all times. Now, the food stains are sending me over the edge. I love fruit and fruit is becoming my enemy.

Some days, I am embarrassed to admit that I pick Sloane's fruits choices based on what she is wearing. Irrational and a bit concerning.....I know!!! If she has something new and light colored on or if there isn't a bib accessorizing her, I'll give her an apple, pear or banana. If her outfit is older and darker colored, she gets watermelon, berries or melon. Thank goodness, Sloane would choose to eat any fruit over any other type of food any day because her mother is a nut!