Melissa Marie: Flashback Part 3!

 

This post is the last part of the most difficult flashback we dealt with during our 100+ days in the NICU.  

It's a story of determination, courage and obstacles overcome to complete our family!

Melissa sucking her binkie!
This one doesn't have milk attached!

With surgery complete and recovery underway, the last hurdle is eating.  Before surgery, I was told no more bottles, only binkie trainers.  The rest of my feeds have to go through the NG.  This is so hard for me because I was bottle feeding in the NICU and I don't understand why they won't let me do it here. It is frustrating for my Mommy and Daddy too! I wish I could show them I can do it! This is the last step before I go home! Until I can master this I can't go anywhere, or can I? A few days pass by and I continue to work on my feeding.  I continue to work with the binkie trainer with the help of a feeding therapist, Mommy, Daddy and all my nurses.  Grammy even came one night to make sure the nurses were practicing with me! It isn't that simple though. 

After a few days of practicing Mommy and Daddy were starting to get very discouraged because I have been spitting up all my feeds since the surgery and I still am not coordinated enough to use my bottle safely according to my feeding therapist.  While I usually spit up a lot because I have severe reflux and I don't have my wedge I had in the NICU, Mommy and Daddy feel that this is more than usual and we need to find out what is going on! Why am I spitting up more than I used to? 

Daddy and Melissa waiting for
transport to come and take her to GI
study

So now the hurdles before home are an Upper GI study and some labs and still figuring out feeding. I'm not looking forward to this stuff! They are going to take my blood and they are going to also make me drink this stuff called barium.  When I drink the barium they will take pictures of my upper GI while they watch the barium going down from my mouth to my stomach.  The afternoon of the GI study, a lady came by with something for me.  A brand new wedge finally arrived! Mommy and Daddy had been asking for this since we arrived at the new hospital.  I had one in the NICU but we forgot to bring it over! When the new wedge arrived I was so happy. It had a neat little seat on it where Mommy and Daddy could set me down like I was in a bouncy seat and strap me in so I wouldn't fall! The wedge kept me upright and I felt so much better. I started keeping a little more down, but I still have been spitting up more than I used to in the NICU. The GI study is still important to find out if there is something wrong! If they are going to send me home with a feeding tube, which the doctors say is the only way for me to go home now, Mommy and Daddy want to make sure there isn't anything really wrong that would make me need that tube forever and not be able to do bottles someday!

After the GI study the doctor came down to talk to Mommy, Daddy and me.  She told them, there was nothing significant on the GI results and that it just appeared to be severe reflux.  She told them there wasn't much they could do for me at this point and I was to continue the course for now.  So discouraging for us all.  Now the doctor was saying there was no way for me to go home without a feeding tube.  As Mommy and Daddy braced themselves for taking me home, feeding tube and all, I continued to recover from surgery and continued to spit up a ton.  A few days went by and Mommy and Daddy began to get training on the feeding tube.  Soon a brand new feeding tube, pump and equipment came to the room.  This was the equipment Mommy and Daddy had to learn how to use for me so they could take me home.  It didn't take long for them to pick it up and the doctor said all I needed to do now was have 3 good days of weight gain and I'd be free to go!

September 1st, 2011: Mommy and Daddy had gone home for the night because they were tired and had been sleeping on those silly chair beds they provide in hospitals. They needed a good nights rest and they also hadn't seen Ethan and Katelynn for a few days. They were starting to miss them too! The phone rang at about 9pm that night and my nurse was on the line.  "We need you to come up here with Melissa's carseat so we can preform the carseat angle tolerance test", she said. Mommy asked why they needed to do that since I was transported from the University over in a carseat and had passed the test there.  They continued to insist on the carseat.  Finally, Mommy and Daddy agreed they would bring it but would bring it in the morning as it was late and they wouldn't get there until very late.  About 2 hours went by and Mommy and Daddy decided since they weren't sleeping anyway, they might as well bring me the carseat for the test.  They packed it up in the car, along with a bag of clothes for me since I hadn't had clothes for a few days. The new hospital isn't like the NICU where they give you cute clothes to wear! I had been wearing a gown for a few days.  Mommy and Daddy arrived at 11pm that night.  I was already asleep, but Mommy knew I'd be up soon for a feed so she thought she'd surprise me.  She picked me up and held me until it was time for my feeding. When the nurse came for my feed with the binkie trainer, Mommy prepped everything and put the binkie in my mouth. I opened my eyes and my eyes smiled! I felt so happy to have mommy. 

Melissa all ready to go home from the
hospital

The next morning at rounds the doctor decided they didn't need to do the angel tolerance test in my car seat after all since the NICU had sent me over in a car seat! Mommy and Daddy weren't impressed that they had rushed up with the car seat the night before, but they were also relieved I didn't have to do the test again.  At rounds we discussed the possibilities of going home and finally the decision was made. I am going home today! There were still things to do before I could go home, so Mommy and Daddy insisted I get a bath today before going home! They started packing up all of my things and Daddy made several trips to the car.  Mommy practiced placing my feeding tube, giving me a feed then she gave me a bath.  After my bath, I finally got to wear clothes! Mommy and Daddy picked out a very special outfit for me to wear home! It was a pink outfit with hearts. It was so warm and fuzzy.  This wasn't just any ordinary outfit though.  It was an outfit Mommy had picked out special when I left the NICU from a place called Hopes Closet.  In the NICU when were there, they let families pick out an outfit for their baby.  Some outfits were really big and others not as big. Mommy picked out an outfit she felt I'd grow into eventually but I spent so long at the new hospital that I grew into it before I went home! This outfit made me feel at home at the NICU again because it came from that special place! I smiled big when mommy zipped it up! It was perfect! It was then time for the last thing.  Time to get into my car seat! Daddy strapped me in and put my car seat blanket over me. 

As we left the hospital, Mommy smiled big. This was it! I'm the last of the trio, we will finally be a family in 1 place. One town, on one street, in one house! We got in the car and Mommy made 2 phone calls! One to my Grammy and Pop Pop to let them know we were on our way home and the other to my special friend I met along the NICU journey.  Grammy and Pop Pop cheered and said they looked forward to seeing me when I got there.  My NICU friend promised to come visit soon! I am so glad she will keep in touch with us because I really love her like family. We've been through a lot together during my 100+ days!

Mommy helping me with the Binkie trainer

When we arrived home, I got to show everyone how I use a binkie trainer and then got the rest of my feed in my feeding tube.  I then was layed in bed.  It was finally time to rest in my own crib, in my own room, in my own house with my family!

 What a difference a year makes!

Let's jump ahead now, September 2nd, 2012. It's hard to believe I've been home for 12 months and we've been a family of 5 in one place for a whole year!

So today is my "Gotcha Day", the day Mommy and Daddy got to FINALLY bring me home from the NICU and hospital. We get to celebrate, just me, Mommy and Daddy!This morning we got up a little early and everyone got in the car and headed south toward Portland.  Mommy and Daddy have a special activity planned for me there!  My grandparents in Portland agreed to watch my brother and sister for a couple hours while Mommy and Daddy take me out for my special day. 

My first ever carousal ride!

When we arrived in Portland, Mommy and Daddy took my brother, sister and the dog to my grandparents house and we all had a little something to eat.  I had a little bottle before we left on our adventure.  When we finally left, Mommy and Daddy took me to the mall where I got to look for a new dress.  We didn't find one so we left.  We got on the freeway and drove a little further to a place called Oaks Park.  Mommy and Daddy got me out of the car and dressed me in a cute shirt and jeans for my outing. They carried me to this big ride called a carousal! I get to ride horses! They aren't real horses but they sure are pretty and it looks like a lot of fun! Mommy and Daddy bought me a ticket to ride 1 time.  Daddy and I picked out a really neat horse that was black.  She's a pretty horse! I sat up there so tall! I smiled at everyone and waved too! I love going around on the carousal! Soon the ride was over and I was sad. I started to cry a little.  Mommy could tell I really like the carousal.  We walked around Oaks Park for a few minutes looking at all the people, rides and even went into the gift shop.  We didn't find anything to buy there and I was still sad so Mommy asked Daddy if we could buy 1 more ticket for the carousal.  He agreed that would be ok and took me to buy the ticket! I held the ticket tight in my hand and soon it was my turn to ride the carousal again! This time I picked a different horse that was white!  I waved at the people again and smiled and laughed! When the ride started it felt a little fast for me so I asked daddy to ride with me this time! He jumped on the horse behind me and we rode around and around! I waved, smiled, laughed and clapped!  I even waved at mommy who was being the photographer today! She took lots of pictures of me riding! She took a few videos too! It was fun!

My 2nd ride! Daddy rode with me!

Soon it was time to leave Oaks Park and head back to get my brother and sister! We had one more stop before that though.  We got to go back to the mall to see my friend who takes my picture sometimes! We got to give his sister some of my brothers old clothes cause he's getting too big for them now and she is having a little boy soon who will like to wear them! We also dropped off one of our swings and baby bouncers for him too! Mommy and Daddy say we are going to need the space in our house where all those things were, for more fun things for us someday!

After our visit with my photographer friend, we headed back to Grandma and Grandpa's house to get my brother and sister! When we got there, Daddy had a good idea. He invited everyone to have dinner at one of my favorite places called "BJ's"!  It was fun to celebrate with everyone today! It's amazing what a year has brought to our family!  We've had our share of ups and downs this year with all of us starting out so tiny at 28 weeks gestation and then my lengthy (100+ day) stay in the NICU and Children's hospital. Although we struggled and still have our share of challenges, we are defying the odds and surviving and thriving despite our prematurity!

Some milestones I have reached are:

two bottom teeth
crawling
pulling to stand
walking assisted
waving
eating crunchy, soft and chewy solid foods
saying "HI"
overcoming severe reflux (only minor episodes now)
putting 2 nesting cups together
coming off all of my medications for lung disease of prematurity

My BIGGEST news is that I no longer have to go to cardiology because my ASD (Atrial Segundum Defect) or hole in my heart has closed on it's own! I do not have to have surgery! The doctors said when they found the hole that it was too big to close on it's own! Everyone prayed hard and with faith it closed!