Don't Let The Door Hit You

So here it is! On its way out the door!

The kangaroo pump and its accessories. 

Ironically, about 30 minutes before we arrived at Dr. K's office for the mickey button extraction, the medical supply company called to place Sloane's re-order for July. Telling the customer service rep that I would not need to replace an oder because my daughter's mickey button was being removed in 30 minutes was almost surreal. There were cheers from the customer service center. These are the people who I have talked with for almost 2 years about my child's needs. They, too, can understand the excitement we are feeling. 

Of course, having a child with a medical need is emotional. But there is a whole another end to having a child with a special medical need and that is the material stuff involved. In our home, in the past 22 months we have had all kinds of medical supplies. When we first arrived home from the NICU, I was so overwhelmed that I had one of the aunties organize the stuff in a labeled chest of drawers. I couldn't handle all the boxes, tubes, syringes, bags and unnecessary things that screamed "your kid has an issue" all over my house. Over time, the stuff has dissipated considerably but it is still here. 

I am very happy to be sending it all back! I posted months earlier about my hatred for the IV pole. Having an IV pole in your home, is beyond stomach turning. If it doesnt scream out sickness, I dont know what does. When I chatted with the medical supply company about returning everything, guess what they don't want back? guess what I own now? the fucking IV pole!! Can you stand it? Apparently, you buy it through insurance. Not rent it. He told me I can donate it as well as the over 100 feed bags I have and the extra mickey buttons. None of it can they take back or want back. A complete sin if you ask me. I am going to try to do some research on where to donate it, but if I cant find somewhere I basically begged the gentleman to take it all with him when he comes for the pump on July 12th. To which he agreed. I think simply to stop hear my rant and rave about how ridiculous it was that these things were going to go to waste!! I have a way of talking and talking about something I am passionate about until I get my way either out of agreement or simply surrender of the other party! Ha 

As for Sloane's mickey button site, it looks good. We have not seen any drainage. And as gross as this sounds, there is no smell of gastric juices. I assume the site has started to close on the inside. Tomorrow is the day that if all looks good, Sloane can get wet or have a tubby and maybe be down graded from the big gauze to small gauze. And then down to a band aid!! 

Hole OR Whole

The extraction of a mickey button is not nearly as involved as one would think. My hubby and I had some knowledge that yesterday's doctor appointment would not be earth shattering for Sloane. We had asked many many times before we had Sloane's mickey button implanted, how it would come out. Add that to the fact that we both have changed Sloane's mickey buttons more times than we wished for.....we werent afraid for the procedure.  

Sloane has white coat fear as I have already described in earlier posts. The thing is, Dr. K is so gentle, that Sloane's antics are almost non-existent. Of course, there were the normal "don't touch me screams" but as soon as Dr. K softly talked to her about what she was going to do....the screams stopped. 

First, the balloon in the mickey button is drained. Next, the button is pulled out. Then, the site is cleaned. Next, a vasaline type sealant is placed over the site, then gauze pads, and lastly the entire area is sealed with sticky medical tape. It takes all of 5 minutes. If you witnessed Sloane last night, you would have seen that she was in NO discomfort at all. She was a looney bird tonight!

The thought is that the site heals from the inside out. In 95% of cases, the hole is closed within 5 to 7 days. Five percent of cases require surgical intervention. I do think Sloane's hole will close like the majority. She heals very well from the tiniest hang nail to the tip of her nose that she skinned off on the driveway. 

We are changing the dressing daily for the next 7 days. The goal is to keep the site clean and to see if there is any drainage dripping from the inside to the outside. Today, we got a good look at the mickey button's site. My dad asked me yesterday how big the hole was. I said about the size of an eraser tip. To which he said..is that's small? I am sure he thought I was being a bit optimistic. Which I was. Now, after examining it a bit tonight, I would say the site is more of a slit rather than a hole. The slit looks to be the diameter of a cheese stick. It is more significant that I had thought but I am aware that is because her belly is so small. I almost thought.....hmmm it looks like Sloane has a 2nd belly button. 

The dressing looked good tonight. My hubby and I agreed that we didnt see any drainage which is great news! Because Sloane has stuck her finger in every hole in her body already, I thought it would be best to keep this hole safe from any exploring. LOL I dressed Sloane in a romper today and for the next few days she will be prancing around in the same. 

I do keep running my hand over Sloane's belly. I dont know Sloane without her button. The first 3 weeks of her life, she was swaddled tightly with tubes and ivs dangling. We didn't have as much cuddling, touching and full skin to skin as I had dreamed of. Of course, we did do some of that but when you are afraid of your child or of hurting your own baby, the experience loses it luster. Once the g-tube surgery happened, holding her was off limits so her surgical site could heal. At 7 weeks old, Sloane came home with a long tube hanging from her mickey button site as well as a case of  reflux that required her to be upright at all times....not much carefree snuggling. I remember the 1st time my niece came to my house, I put her 3 week old tininess on my bed horizontal and cuddled. We could never do that with Sloane because of the reflux. Unlike normal children when they refluxed, Sloane's spit-up would aspirate into her lungs thru her cleft. Letting her lay down was a huge no no.

 Let me clear, I held Sloane ALL the time. 24 hours a day she was in my arms! I couldn't get enough of her, but the act was very structured and careful and there certainly wasn't any playfulness involved.  When Sloane finally got her mickey button at 3 months old, we were more relaxed because the button seemed safer but not 100%. There was ALWAYS the fear that button would get caught on something and get tugged out.  I don't know Sloane without her button. This is going to be a whole new experience for us all. I cant wait for all the bandages to come off and have her with no clothes on next to me. Sloane has always been perfect, but without the button she feels whole!!

GONZO

THE FAT LADY HAS SUNG!!
The mickey button is gonzo!!!

This is Sloane pointing to her boo-boo bandage over her mickey button hole.

I do not know what made me happier seeing Sloane's mickey button being thrown in the the trash OR coming home and throwing away the feeding tube connection piece that has been laying on my kitchen counter top for 660 days!

This no longer lays across my kitchen counter! 

Yah~fucking~whoo!!!

I am sure everyone wants to know how today went. I will tell all the details of the procedure and the process of healing tomorrow night. I am exhausted tonight. But 2 things to know:
1. Sloane had NO pain at all.
2. My hubby & I are still in shock.

Why Wait?

My last post titled 4,600 was sent out to the cyber world at 1:45pm on Tuesday, June 26th. My last line said more to come. Here is the more as of 6 hours later at 7:45pm!

I spent the next hour telling my hubby the news, shaking my head because I used to wonder if the mickey button would be present for Sloane's 1st day of kindergarten, and then I called Dr. K's office to make an appointment to have the mickey button out. I told her secretary Gail, who I know well, that it wasnt an emergency and did not have to be this week. But because of 4th of July next week, the 1st appointment she had was Monday, July 9th so I took it. I called my hubby to tell him when we would be going in. His response was July 9th??? Why so long?

And so the conversation began of me telling him that I brushed past this week and there was no availability next week so July 9th. With that came some probing by my hubby as to why I didnt want this week. So I admitted it....I am afraid. I am afraid to lose my safety net. I am afraid that something bad is going to happen. I am afraid to go back to the dark place we started in almost 2 years ago. Of course, my hubby rationalized with me, brought me back from the brink, suggested I called some of my circle of trust if I needed more opinions and then said the day is up to you as her mom.  I called Gail back to find out if this week would work before I got ahead of myself and yes, it would. Dr. K had an opening tomorrow, Wednesday, June 27th at 3pm. Tomorrow HOLY SHIT was my thought??? I'll take it I said. Before hanging up I asked Gail what time she left the office in case I changed my mind.

 And so I made some calls. Calls to get reaffirmation. I called one of the aunties. The one who kicks my ass when I am failing. After she showered me with wonderful compliments about how my mothering is what got Sloane to where she is today. She said, she understood my fears, but ultimately agreed with my hubby. Tomorrow sounded like a perfect day to get a mickey button out. Let it go, she said. And so I called my brother. He, on the other hand, felt my fears were founded but didnt agree with them at all. HA! In his no nonsense manner said that's it, it's over, let her move on, she is perfect, she did her job, get it out so we dont have to see it anymore. Lastly, I left mammie a very calm message discussing a few different unimportant things and I slid in to the voicemail about the mickey button coming out tomorrow of July 9th and the fact that I was conflicted about it all. She called me back 3 times in 3 minutes with 3 different voice mails telling me with 3 different diplomatic versions that tomorrow is the day.... not July 9th.

Since tomorrow became the day that will change our lives I havent stopped thinking, being quiet, reflecting and almost crying. When I finally got around to opening my mouth, I called tit-ti and told her. She, too, was taken back but asked if I was okay. My answer was a flat out NO. I am so emotional. My hubby, as he promised weeks ago, is on cloud nine. Tomorrow is the day that will make him happier than he has been since the moment Sloane crashed into our lives. I am, too, beyond happy, I am relieved, I am proud of my daughter, I am scared to death, I am nervous, and I am afraid that now that our world's spin is slowing down...the past 22 months will hit me square in the heart.

There was a time when I didnt know if I would be able to handle having a medically challenged child because it was all too much in the beginning, there was a time when I worried my hubby and I would end this journey less of a couple instead of more of a couple as we have, there was a time when I thought I would alienate myself from my friends with children with no medical needs because I couldn't relate to their normalcy, there was a time when I thought I would drive my childless friends away because I was sad about Sloane's teeny tiny birth defect when they weren't blessed with children of their own, there was a time when I thought a feeding tube was going to be Sloane's nemesis, there was a time when I could not bare the thought of a 2nd child because Sloane's needs all encompassing, there was a time when I never thought I would get back the emotional and mental parts of me that I repressed because Sloane needed all of me.

Tomorrow at 3pm our lives will change once again. They will change they way they did on July 26th, 2010 when Sloane stopped eating any nutrition by mouth, and on August 2, 2010 when we go our diagnosis of a Laryngeal Cleft, and on August 31, 2010 when Sloane had her g-tube surgery. Wednesday, June 27th, 2012 is day that be forever marked in our hearts. Wish us luck!!!

4,600

And her weight is 27.8 lbs! Sloane gained 4 oz. in the last month. At this age, children averagely gain 1 pound every 3 months which equals 5 oz. a month. Sloane is right where she should be in regards to weight gain. Our ped actually said that she thinks more calories were being pushed into Sloane than needed when she had her tube feeds on top of her oral diet. We kind of were force feeding her for the hydration purposes. She did not need the calories from the milk tube feeds for nutrition at all.

Dr. Reibman and I chatted a bit about Sloane's growth curve. She is in the 65% for weight and the 50% for height. She actually weighs more than the average child, but apparently is not as tall as we think she is!! LOL We hear from so many people "she is so tall", but in reality she isnt. She is average height. I asked if I should give her ice cream everyday to help her bulk up. Dr. Reibman laughed and said no, she doesnt need to bulk up. She is a perfect weight. I know this woman thinks I am a neurotic mom or just crazy!!

So the verdict is:

the mickey button will be leaving the building or in this case leaving Sloane's body. 

The mickey button is being pulled.
The mickey button is being removed.
The mickey button is being taken out.
Our ped is thrilled with all of Sloane's progress all around....her diet, the amount she drinks by mouth, and her growth. She said "it's time to call Dr. K and have her remove the tube."

With a different audience, I would have been waterworks central but our ped is no joke. She is all business so I contained myself to a teary eye. I know when I see Dr. K I will cry and perhaps snort cry. There is no way anyone, who has not gone thru this, could ever understand the emotions attached to having a medically challenged child. This feeding tube and mickey button OR rather plugging your child in to eat changes life as a parent. There are many people who have downplayed our journey for the sake of keeping us strong and many people who have looked at us with "poor things" in their eyes. Which ever approach they took, it never felt right. This journey can only be accepted, understood, and traveled if you are the ones living it day in and day out.

My husband and I have traveled this journey. It only affected the 2 of us and of course Sloane. Although she knows no different at this age. We, on the other hand, are forever scared. I still don't believe it. And I wont believe it until it is out and I can run my hand over my daughter's belly without a roadblock.

Having the mickey button removed and send all the medical supplies back is the end to ONE part of our journey. We no longer will be the home with the special child. We will no longer be the parents on hyper alert. Every time Sloane cries, I will no longer immediately touch her belly to see if her button was dislodged. And the list could go on and on.........

So after opening and closing Sloane's mickey button just about

4,600 times in 22 months (Sloane is 23 months old, but her button was not put in until she was 1 month old). 

Sloane Jacqueline's mickey button 

is officially closed for business!!!

 When Dr. Reibman said "it's time to call Dr. K and have her remove the tube." I said "now?" and she said "yes, now". 

When is now? More to come on the date of our bye, bye mickey button appointment!! 

A Foodie

Tomorrow is Sloane's weigh in! I am not quite sure how it is all going to play out. I do not know what our ped is expecting for a weight. She weighed Sloane back in early May when she decided to take her tube feeds down to 2 a day so I am sure we will be using that weight as a gauge. Sloane's growth curve will play a large role I assume.

I do not think there was anything else for us to do as parents in terms of her nutrition. She eats more than we do some days combined! Either she has the best metabolism of our entire family OR she in midst of a major growth spurt!

Today, Sloane ate like the very hungry caterpillar! There is no rhyme or reason to any of it. She is foodie who will try anything. Some people in our family just love to sit and watch her eat.
In the short 12 hours she was awake today, she munched thru: 1/2 piece of french toast, 1 piece of turkey sausage, 1/2 container of adult greek yogurt, a banana, a cheese stick, 1/2 avocado, grape tomatoes, 1/2 piece of pizza, grapes, a box of yogurt covered raisins, a yum yum cookie, an apple, fish sticks, spinach tortellini, peas, cauliflower, strawberries, and cucumbers dipped in taziki...all with a glass of chocolate almond milk, flavored water and a dish of Del's Lemonade. But that's not it folks. After her dinner, she ate off my hubby's dinner plate. She devoured 4 of 5 slivers of basil parmesan chicken sausage, hearts of palm and raw peppers! It was ridiculous!!

Tomorrow should be interesting! I can't imagine that eliminating 7 oz. of 2% milk will have that much of an impact on Sloane's growth given the daily diet she maintains!

As for Operation Fluids, Sloane is doing great. We are averaging between 12 to 16 ounces a day of fluids. We are at 8 1/2 oz. of liquid to one packet of Simply Thick. I did experiment a bit this week with the almond milk.  I thought because it was thicker than water I could use less Simply Thick for the 8 oz, but Sloane's coughing in the car while she drank it yesterday reminded me that I couldn't. And today, she took a drip/not a full sip/a tiny drip of unthickened water at a water cooler and she hacked and hacked like she smokes 10 packs a day reminding me that Simply Thick is here to stay!!

Bag Lady

When I was teaching I would complain about being a bag lady. There was always a bag hanging off of each of my upper limbs. I had a school bag, a handbag, a lunch bag and the ever faithful treat bag which was filled with all the extras for my classroom. Some mornings the walk from my car to the building was a juggling act. I would curse the bags dangling from my arms!

What I have now realized is that being a bag lady as a teacher was a lot easier than being the bag lady I am now as a mom. The amount of bags that adorn my arms these days is ridiculous. We head down to our family beach house for the weekends during the summer. Today, we were only going to be there for the day....maybe 8 hours, but the pile of bags gave the impression that we were staying for the weekend. I am not sure which is worse...packing the bags, lugging the bags, or unpacking the bags. The bags take on a life of their own and organizing them is a job of its own.

Today, there was:
a diaper bag full of everyday essentials,
a lunch bag filled with Sloane's meds, Simply Thick and treats,
a beach bag stuffed with sunscreens, towels, hats and beach needs,
a sand toy bag overflowing with shovels, pails and sand toys,
a duffel bag bursting with clothes, shoes, and hygiene needs,
a shopping bag toppling over with food for lunch,
and a handled box overstuffed with our diapers and wipes needed for the summer!!

All of these bags I packed, organized and unpacked!! I am a bag lady and most days I can't keep them straight. I try to keep the bags somewhat packed with their essentials and then add in what we need for the particular day. I try to keep the bags in their designated places as to speed up the packing process. I try to put things in the bags as I think of it during the week because I know that "oh I need to remember this" will be a fleeting thought. The summer just started and I already wish I could take all the bags and torch them!

Anything For A Nap

I feel asleep mid blog last night. Does that give any indication as to how I am feeling this week?? Here is what I wrote before I drifted into dreamland:


So the truth be told, I am fighting to keep my eyes open and it's only 9pm. My hubby has been away all week and I am feeling the pain. We both miss him. Although we are used to him traveling, 4 days/nights is a long time. He is due home within hours.


The week has been fun! Sloane and I tend to be a bit fancy free and footloose while my husband is away so it was a busy few days. We had 2 beach days which were successes! Sloane is a beach bum just like her momma. YAHOO!


On the Operation Fluids front, one week down and one to go. I talked with our ped yesterday and she has happy with the amount Sloane is drinking. We will see her on Tuesday for a weight check and a discussion about the next steps. I have started to think about what life is going to be like without the tube. Of course I am not using it right now, but it's still there. It's presence in our lives is in plain sight. Im hoping the old adage will hold true "out of sight, out of mind".


After a good night's sleep, I am feeling better. Thank God!! Having Sloane, on my own, makes having a toddler even more exhausting. I have friends who are single moms by choice and I have friends who are single moms by tragedy. Either way, I have complete admiration for their journey. It is challenging at times when you are alone. 


Sloane, too, is feeling the effects of our fun filled week. She slept in this morning and collapsed into her nap this afternoon after lunch. She is a complete joy and such a good girl UNLESS she is tired. Then she becomes a tantrum throwing sweet child. HA! I am all about the naps. I like to force a power nap in the am if we have a busy day. I like to prolong the nap until after lunch if she needs a long one to recover from living the high life for days. I like to push an afternoon snooze if we have evening plans so she can enjoy her night. I like to let the nap develop as it needs to if we have nothing going on. I have become nap obsessed these days. 


Yesterday, I believe I have done the craziest thing yet as to not protect the importance of a nap. I needed stamps. Getting stamps is a pet peeve of mine. Probably because many times I need just one and I need it in a hurry. Buying stamps is a real pain in the ass. Getting Sloane out of the car for a 2 second errand aggravates me. I think stamps should be sold in drive up machines. And not just flag stamps! I think pretty stamps should be sold in machines too. I would LOVE that.


 Anyhow, I needed stamps yesterday and Sloane was snoring in the back seat after her long day playing on the beach. We were both covered in sand and sunscreen looking a bit dishevelled. It was 4:30 and I knew I only had 30 minutes to mail what I needed to. There was no time to drive home and get freshened up or wait for Sloane to wake up. This situation called for desperate measures or rather a crazy idea. I decided to drive to my neighborhood post office and look for the nicest person I could find going into the P.O. or someone I knew. At that point, I was going to hand that person $9.00 (which SHOCKINGLY I had in my wallet...I NEVER have cash) and ask him/her to buy me a sheet of pretty stamps. I pulled in the parking lot and waited. As Sloane snored her 1/2 snore, I glanced thru the parking lot. Within minutes a woman walked by who looked like she could sympathize with this mom's plea. I gave her my story after an "excuse me, can I ask you a favor." She laughed, said of course and trotted off with the money. Two minutes later, she returned with a sheet of Celebrate stamps and a giggle. Everyone was happy! Sloane continued snoring, I stamped my mail in time for an evening's pick up and I am sure the woman couldnt wait to share the funny story about the hot mess mom who approached her in the P.O. parking lot.....all for the importance of a nap!!

A Perfect Button

There it is! The infamous mickey button. Many people think it is located in or near the belly button, but as you can see it isn't. Not to repeat myself because I have said it in earlier blogs, but we had the BEST surgeon ever. Dr. K, at Hasbro, is an incredible doctor with a wonderful bedside manner. She was tremendously gentle with our daughter and our emotions. I am sure, if you dare to imagine, what it was like to hand over our 3 week old baby for surgery, you will understand how the surgeon becomes your hero at that moment.

Sloane's mickey button was not implanted at the time of her surgery. Some surgeons do put it in during surgery, but Dr. K uses a different approach. Sloane had a longer tube insert for 6 weeks before the mickey button was put in. This was done to insure that the track for the mickey button to slide into was perfectly formed. And it was!! Our time with the longer tubing was not fun at all! Having a 2 month old with 10 inches of tubing hanging out of her belly is somewhat of hazard. We were CONSTANTLY nervous that it would get caught on something and get torn out. We had a few close calls where it got tugged a centimeter here or there, but as time went on we would just slide it back into her stomach. It is amazing what you can do when you have to do it!! Sloane has the faintest scar in a perfect semi-circle above her belly button. That is where the incision was for the g tube surgery.

Sloane has been drinking. Last night could have been big fat disappointment but it wasnt. We had Father's Day dinner with my family. Now, going out to dinner with 2 children under the age of 2 is interesting. Because it was a special occasion, we werent at the most family friendly restaurant in our area. It was a bit more upscale. The girls were dressed in their Sunday best, we timed out the schedule down to the minute and the diaper bags were packed extras of everything. What did I forget though? You guessed it!! The sippy cup that was full with a fresh 8 ounces. Why? How? and Are You F-ing Kidding Me? were running thru my head so I am sure my hubby, mammie and poppie were thinking the same. A Mommy of the Year Moment!! NOT!!

But by some stroke of luck (although the drive back home would have only been 20 mins.), I remember that I stocked an emergency diaper bag for my hubby's car (which we drove in)and in it was an extra sippy cup and packets of Simply Thick. Hooray!! I redeemed myself although I was concerned because Sloane has only been drinking out of her favorite cup for weeks. As side note, Sloane dropped one of her favorite cups and broke it as we left the house yesterday morning. We were down to one favorite cup until this morning, when she dropped that one and now there are none!!!  Fabulous!!! NOT!!

Back to dinner, not only was I worried about Sloane not having her favorite cup, but she also has truly only been enjoying water flavored with strawberry/watermelon drops. Juice hasnt been tops on her list. No cup, no flavor drops for water, just hope! I order up a 1/2 cranberry 1/2 orange juice and hope for the best. Once it arrives on the table, Sloane squeaks out a "wow" and waits patiently for me to mix it in an unfamiliar sippy cup and then shake it up. I hand over the cup and guzzle is the word that comes to mind. Sloane tosses her head back and drinks all 8 oz. like she is never tasted anything as yummy before. Big Fat Disappointment. NOT!!!

Windy Road

It is Day 4 of Sloane going tubeless! I was mentally keeping track of how many ounces Sloane had been drinking each day, but in regular Tarra form I took to documenting. In the midst of the color coded appointments & events, there are small numbers in the left hand corners. You can see a 13, 13, 18, and 14. Not too bad at all although there hasnt been another sip of milk swallowed since Wednesday. I know what you are all saying...Tarra, let go of the milk! And my answer is...I am trying too, but old habits are hard to break.

Over the past 4 days, I have learned something. I have NO IDEA how to have a child who does not have a medical concern. For example, Sloane's reflux med and daily vitamin are pushed thru her mickey button via a syringe. I was going to continue doing that until on Wednesday when our ped asked me why would do that. My answer was concerning looking back on it now. I asked her how else should I gave them to her. To which our ped says thru her mouth.

Of course! This is what moms of babies who do not have feeding tubes do.  The thought never crossed my mind. Sometimes the simplest rearing things are not in my realm of mothering. I am sure it is hard for people to understand. But basically, Sloane's mouth should have had a sign on it that said EXIT ONLY for the first 5 months of life. I did not give Sloane a morsel, a taste, a dollop, a drop or a lick of food via mouth until Christmas Day when she was 5 months old. Bananas! That was the first flavor Sloane had via mouth since day 4 of life. We took pictures, documented the happenings in Sloane's baby book and jotted down the first food event in her daily calendar. The look on Sloane's face was priceless. She was in love. A foodie was born. The sad part about it was that Sloane was only allowed a few spoonfuls each day, not for nutritional purposes, but for sensory issues. I was paranoid that she would have sensory issues with foods because she wasnt taking any in. So for months it was a spoonful here and a spoonful there. Sloane's mouth didn't get frequent use of solids until months later. That's when we put an ENTER HERE sign on her top lip. LOL Now, her mouth is like an expressway at rush hour.

So giving Sloane medication via her mouth wasn't the elementary answer for me. I am a mom who doesnt connect her dots with a straight line. My motherhood lines resemble more of a windy road.

Too Much

I think the excitement of yesterday's news was too much for all of us to handle! It appears the 3 of us need some quiet time. LOL For my hubby and I that means  we can begin to dream of a vacation to a tropical location. We both werent able to even consider this while Sloane had her tube. Now that it is closed for business and may soon no longer be a family member...we are both beginning to dream of a time out! Sloane, on the other hand, needs an actual time out!

Yesterday was too much for her! I knew it this morning when I said to a friend "I don't think I am going to take her to music class; she is too tired." But instead of listening to my mother's intuition, I took her and it did not prove to be one of Sloane's stellar moments.

It all began well. She listened, she followed the directions and she had fun. Then the running began. While the other children sat and listened to a book. Sloane ran around the blanket without stopping. On and on and on. I knew it then. OVERTIRED!! And I should have wrangled her in, but instead I embraced her spirit and she eventually stopped. What happened next has made me cry for the 10th time in 24 hours. The other 9 times was tears of joy. This 10th time, I had tears of embarrassment and disappointment.

Sloane voluntarily pushed another little girl in class. 2 hands on the back. Big push. HORROR was the look on my face. I scooped her up with a big NO and ushered out of the classroom for a chat. She knew she was wrong and, too, shed a tear. We took a few minutes of quiet and headed back into the room. Sloane said she was sorry and we sat quietly for a minute. The play resumed and it all seemed okay until......I THINK Sloane pushed cuzzy. Although all the other adults in the room couldnt confirm, the look on her face showed me again she didnt something wrong. This time I scooped her up and we headed out the door with cries of "no momma, I dont want to!" I was beyond embarrassed. We came home in silence and 30 minutes later, mid-lunch, she collapsed into dream land.

I could have defended her to the other parents with statements like: you have no idea what my kid had to do yesterday while your child probably relaxed at home OR i am so sorry, my hubby and I have been so worried about a feeding tube that we missed the moment that Sloane's spiritedness crossed over to physical. Instead, I ranted those things to my friends and SIL when we reviewed the events. The truth is no cares why a child is a brat. Sloane is turning 2 and she surely is being 2. So as I sit her glowing that I did not plug her in for milk this morning at breakfast because she drank 4 oz. of it all on her own, I , also, sit here knowing in my heart that the terrible 2s and 3s are on their way. As I have learned to manage a feeding tube for the last 23 months, I now need to learn to manage unacceptable behavior for the next 23 months!

Secretly, I can not wait for the day that cuzzy gives Sloane a gentle shove. It will make me feel much better to know that it is even steven!! HA.

As for Closed For Business blog, I am still awaiting for our ped to call. It is mid-day. TO BE CONTINUED


7 hours later...the verdict is: Discontinue use of the feeding tube for 2 weeks. After one week, I call our ped with an update on the daily volume intake (today was 13 oz.) and in 2 weeks we go in for a weight check. At that point if all goes well, we will begin the talk of removing the mickey button altogether. I should not hook Sloane up to it if she has a day that she doesnt drink. We need to ride out the next 2 weeks to see what happens. It is all very exciting......Operation Fluids is entering its biggest battle yet! I am cautiously optimistic! As my hubby says, the party will occur when the mickey button is actually removed. Sloane did drink 4 oz. of chocolate milk this morning with her breakfast!! YAHOO!!

Closed For Business

I am not going to lie. I was a bit nervous going to see Courtney today. I had many new things to share with her and I was not sure what her reaction was going to be on all of them. As luck would have it, the traffic was HORRIBLE so I knew we would be at least 20 minutes late. I called Courtney and we chatted on the phone as we inched our way to the hospital. Not having to see her expression as I went thru my laundry list of changes took the pressure off. I know I am the mom and have been told many times by doctors that I am in charge of Operation Fluids progress but I was still a bit unnerved.


So as I verbally assaulted (in my head) Boston drivers, I went thru my list:
1. that my ped dropped the volume of the tube feeds down (after her colleagues at the the nutrition clinic raised them) in an effort to get Sloane to drink more by mouth. Courtney was thrilled to hear!
2. that my ped does not have an overly huge concern about Sloane not desiring milk/does not want to force her and that her primary fluid is water. Courtney doesnt have a concern either.
3. that I took it upon myself to allow Sloane to use a cup with a straw, rather than a
sippy cup. Courtney loved the straw idea because it forces Sloane to tuck her chin when she drinks protecting her airway.
4. that Sloane is drinking many more ounces daily since Courtney has last seen her. thanks to our ped dropping the volume in tube feeds. Courtney was over the moon!
5. that we are only 1 more ounce of liquid away from moving onward and upward to the nectar consistency. Courtney was surprised I was thinning out the liquid so slowly. I explained that I didnt want to keep thinning down as the volume Sloane was drinking was increasing because if she did get sick we would not have known if it was the consistency or the volume. One change at a time is my moto.  Courtney did ask me to think about trying nectar today in her office when I arrived.
6. that our ped wants to pull the tube because Sloane is drinking 15 to 18 ounces a day. Courtney agreed that 15 to 18 oz. was enough daily fluids and was accepting of the thought to pull the tube. She told me that she would email, Jenny at the feeding/gutbe/nutrition clinic as I drove, because Jenny would be the person who would give a yeah or nay to Dr. Reibman...not Dr. Rahbar or Courtney herself.

Having this conversation as I drove made it much easier. It calmed me down some. I was a lunatic, cursing driver! I took my fashionista friend with me, who Sloane thinks is her best friend, and I am pretty sure I scarred her for life during the 45 minutes of bumper to bumper traffic with my WTFs, WHY us?, and Sloane's "mama, mama, out". Our wing woman, Mammie, had a prior engagement.

Once we arrived, Courtney told me she had in fact emailed Jenny about discontinuing use of the feeding tube. And so we waited to see if she would respond during our session. 


Sloane was happy to see Courtney, and once settled, she immediately drank for her. I had prepared 7 ounces of water to 1 packet of Simply Thick. After Courtney saw Sloane drink that consistency, she up-ed the anti a bit and thinned out the liquid to nectar consistency (which is 8 ounces to 1 packet). Sloane sipped some more without any concerns at all. So we decided that Sloane can skip a few steps and move onto nectar consistency safely. ONE HUGE MILESTONE for the session!


Courtney and I chatted about that fact that Sloane is able to tolerate nectar consistency and how that opens new doors in the food world. Now, she can have drinkable yogurt snacks, go-gurts and squeezable treats. I am hoping these new dairy based snacks will be a big hit because they are novel. Can't blame a mom for trying to get calcium in any way she can! ANOTHER HUGE MILESTONE for our session!


As Sloane munched away on tuna fish, peaches and cheese, she sipped away on her nectar consistency JU. It was quite a moment to take in. She was her fabulous self! Blowing bubbles, chewing, twirling, sipping, chatting self. And then there was the ping! 


The infamous "You've Got Mail" ping. And clear as day, in black and white print, there it was Jenny's response: It is the ped's decision, but she(Jenny) thinks Sloane can discontinue use of her tube as long as she continues growing like a weed without it. THE BIGGEST MOST HUMONGOUS MILESTONE in almost 2 years! 


THE FEEDING TUBE IS CLOSED FOR BUSINESS!


I cried as did my friend. And I cried every time I said it out loud to someone in our circle of trust. I have no words to express the feelings attached to this milestone. It almost feels surreal. A year and a half go, I wondered if Sloane would enter kindergarten with a feeding tube. My hubby and I are beyond ecstatic. I know the day the mickey button is removed will be one of the best days of our lives. 


Courtney spent a few minutes chatting with me about the feelings a moment like this brings out in a parent. She suggested I write those feelings down for Sloane. Maybe we will? She also said the most profound thing that I could have heard. Courtney said that she learned from us and Sloane. She went on to say that she was skeptical when we first arrived in her office in November 2011. She said she did not know if swallowing therapy could work on a child with a laryngeal cleft as large as Sloanes. She divulged that she was concerned for her development in the swallowing and speech world.  But we or rather Sloane has shown her that it can work. She said she stands behind it now.  Lastly, she said she sees many children and not many of them are as fabulous as Sloane. Courtney finished it up with "it was a joy to spend time with Sloane" to which I said "it is a joy to be her mom."


This would have all been too perfect if it ended there...next Courtney said "so, I am sorry to tell you that I am moving and can not work with Sloane anymore." SO SAD. Sloane will be getting a new SLP, who Courtney will hand pick herself, to continue working with Sloane as we thin out way down to liquids in their natural form. We are 1/2 way there with nectar consistency!! 


I do not know what the timeline is going to be or how it is going to go down, but I do know that I WILL NOT be plugging my child in anymore. I left a message for our ped this afternoon and I am sure we will discuss the details tomorrow. I would like to leave the mickey button in for a period of time just to be sure before we remove it completely. Baby Steps for Sloane and me!!! 

Cartwheels

So I finally got around to calling our ped today to discuss Sloane's progress in Operation Fluids. I had been dragging my feet in calling her; I wanted to be sure that I could give her accurate information based on significant time frame.

So here is how the conversation went: (I am in black/Dr. in red)
"Hello"
"Hi, its Dr. Reibman"
"Hi, How are you?"
"I am good. How is Miss Sloane?"
"She is great. I wanted to update you on our progress over the past 2 weeks. In addition to the 2 tube feeds of 3+ ounces of milk, on an average, Sloane is drinking 12 to 18 oz. of thickened liquid a day. Most days it is about 15, but we did have one day when it was almost 30."
"Wow, that is great. What progress. She doesn't need that feeding tube anymore. I'd like to pull it"
"Really??, that is water though. Not milk."
"Tarra, as I have told you before. I have many toddlers who do not drink milk. It is okay"
"Okay. I just wanted to give you all the facts before we proceed."
"As usual, I know. You are a mom who gets all the facts."
"So, I have a question. If we take the tube away and Sloane only drinks those 15 to 18 oz. of liquid a day, is that enough."
"Yes, it is."
"Okay, we are going to swallowing therapy on Tuesday. What should I tell Courtney our SLP?"
"Tell her that I would like to remove the tube."
(my eyes immediately fill up)
"Okay. What if they disagree? Do you supersede them in decision making?"
"Well, if they disagree, I would like to have a conversation with them about it. Maybe they will want to thin out her liquids more before we pull the tube. What consistency are you at?"
"We are on 7oz. of liquid to one packet of honey consistency."
"Let's see what they think in terms of timing, but Sloane has proven to me that she doesnt need it anymore. It doesn't have to be pulled tomorrow, but we are almost there. Great work, mom."
(now, I cry)
"Thank you! I can not believe it! One last question, do I continue with the 2 tube feeds of milk each day?"
"Yes, why don't you until we talk again."
"Okay, I will call you next week with info from our swallowing therapy appointment and then we see you next month for our 2 year appointment."
"Talk to you next week, Take care!"
"Bye!"

I can not compose the excitement I have. I immediately call my hubby, who is away in a distant land, to share the news. He, too, has relief in his voice. If you know him, you know his excitement does not present as mine. HA!! His is the more mature, reserved grown up kind. Mine is the more giddy, 10 year old, doing cartwheels kind.

I spend the next hour dreaming about what it will be like to have the tube pulled before Sloane's 2nd birthday?? Can that happen? And then I flood my own head with questions. What will Dr. Rahbar and Courtney think about pulling it? Will they slow the process? Will our surgeon, here at Hasbro, agree? What will we do as a family to celebrate the end of ONE part of our journey? The feeding tube is a HUGE part of our journey, but it is not removing it is not the end of our road. Sloane still needs to learn to drink liquids in their natural form. We have months and maybe years ahead of us working on thinning out her liquids. Saying bye bye to the mickey button will be amazing, but giving Sloane a glass of water without hearing any coughs or chokes will be the ultimate gift.

I know I have to get my thoughts together for next Tuesday. I need to focus!!  I have not spoken to Courtney since the swallow study, so she is not aware of lots of things:
1. that my ped dropped the volume of the tube feeds down (after her colleagues at the the nutrition clinic raised them) in an effort to get Sloane to drink more by mouth. YIKES!
2. that my ped does not have an overly huge concern about Sloane not desiring milk/does not want to force her and that her primary fluid is water. OH BOY!
3. that I took it upon myself to allow Sloane to use a cup with a straw, rather than a sippy cup. UT OH!
4. that Sloane is drinking many more ounces daily since Courtney has last seen her. thanks to our  ped dropping the volume in tube feeds. YEAH!
5. that we are only 1 more ounce of liquid away from moving onward and upward to the nectar consistency. YAHOO!
6. that our ped wants to pull the tube. HOLY SHIT!!!

So, to pull the tube? Yes or No? That answer folks we will not have for a week or two. But in the meantime, if you too feel the excitement, do a cartwheel for us!!!!

What is Fuzzy & Red ?

I had always been in awe when a child, I knew, developed a fixation on a certain movie, show or book. I couldn't understand how they could watch or listen to the same thing over and over again. 


Sloane has now joined that mystery! Who is she addicted too? Let me give you some clues and see if could guess. 
It is a he.
It is furry.
It is red.
It has a giddy voice. 
It has a an orange nose. 
If you guessed ELMO, you win!! 


Sloane has developed an infatuation with Elmo. It is Elmo all the time. The most interesting part of this is that I have no idea, aside from her Pampers diapers, how the hell she knows who Elmo is. The writing was on the wall. She did get Let's Rock Elmo for Christmas, but he never really top a front seat in terms of a toy of choice. He has been sitting in the living room, hanging out, but Sloane has been more interested in bopping around the house with Elmo's microphone than playing with him directly. And Sesame Street was not a show of choice either for Sloane. But something has happened, Sloane now is Elmo obsessed!!!


All she wants is Elmo. This has become a bit much for me at times. Im not proud to say that I know Sloane would love an Elmo themed birthday next month, but I can't bring myself to do it. It is not that I have anything against the little red fella, but I just would prefer, while I can still control it, to have a prettier themed party. HA! Again, I am not proud of this. 


Today, though, I may have developed a soft spot in my heart for the fuzzy guy. We were shopping at Whole Foods and what did Sloane eyeball.......





It may be like hitting the mother load in our house!!! This giddy red little man may help Operation Fluids!! Sloane is happy to do anything Elmo related so I am happy to ask her if she wants to drink some Elmo juice!! Operation Fluids is still going along well, but perhaps Elmo can help us in a time of need or become an everyday treat. Now, loading Sloane up with juice is not the idea here. 4 ounces is the limit, but those 4 ounces can be divided up throughout the day and then watered up and up and up until we get the 7 oz. we need for each packet of Simply Thick. If this all works the way I think it may...move over Michael Buble.....Elmo may soon hold the secret crush place in my heart!!

Wateraholic

Today I realized that we soon may hear this statement in our home: "Hi, my name is Sloane and I am a wateraholic!"

Sloane drank 6 ounces during breakfast, 10 ounces while we did errands this morning, 7 ounces during lunch and this afternoon, and 6 ounces during a walk before dinner! Let me do the math for you, that is 29 ounces of thickened strawberry/watermelon flavored water!! It was UNBELIEVABLE!!! I am not clear if this is the beginning of me being the mom of a binge drinker HA or a fluke??? I actually shortened Sloane's milk tube feed tonite at dinner bc I was afraid that she had too much liquid today.

On top of the 29 oral fluids, she also had 3+ ounces of milk in a tube feed at breakfast. In addition to all this liquid, Sloane ate like a truck driver today!!! Maybe a growth spurt?? Or 2 hollow legs today?? LOL  I do think it is time to chat with our ped about Operation Fluids and how to proceed from here. Maybe I will live on the edge and ask her how she thinks the next 3 months look in terms of the mickey button and its role in our daily life?? I know everyone is anxious for it to be removed, as am I, but it has been our way of life for almost 2 years, our safety net, a control panel for nutrition, and it scares the shit out of me to know it will be gone. I am sure that sounds crazy after how much I loathe the tube, but it the thing that allows me to keep Sloane healthy. And keeping her healthy is ALWAYS the goal.

Now, on a completely different note. I purchased the 2nd book in the Fifty Shades trilogy last night. As I checked out the cashier at Barnes & Noble, she handed me a paper with a list of recommended reads based on my purchase. As the cashier said it, I laughed a loud short HA followed with a inquisitive seriously!! There are more books in this genre?? After telling a friend about my future read list, we decided that Barnes & Noble knows Fifty Shades is a phenomenon and are trying to capitalize on it. So here is my public service announcement. If you are a fan of Christian Grey and Ana's love story, according to a national bookstore chain you may also like:
1. Insatiable by Opal Carew
2. Belong to Me by Shayla Black
3. Poughkeepsie by Debra Anastasia