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!