And two weeks later...

May 19, 2016


It's over two weeks since surgery. The first week was the most hardest one. Destinee had a hard time adjusting to the feeding tube. I thought she was going to have a hard time adjusting to the halo traction's but instead was the pesky NG tube. She had about 4 days she wouldn't talk, drink or eat. During that time her twin sister was missing for about the same amount of days unable to return to the hospital and see her sister in the state she was. When her twin decided that she was ready to see Destinee again, it was the day Destinee began to speak again. Little by little drinking and eating followed.

Up to today this is her update:

Beginning weight: 29 lbs to 30 lbs - Today: 33 lbs
Halo weights: 9 lbs on her bed, 8 lbs on her wheelchair.

On about the third day here, a service dog was brought to her room and it brought a sweet smile to her not so happy face.

His name is Cooper and he's the sweetest dog. He hopped onto her bed and didn't even want to leave. He just wanted to lay there next to her.

By the third day physical therapy had Destinee standing and walking. It took a couple of days to have a wheelchair customized for her. But once they did, Destinee found her new favorite place to sit.

                                              The first time she started to walk after surgery.

I look at these picture and I admire my kid for her bravery and strength. If for an adult something like this is difficult, I can't imagine for her tiny body what she most be going through but I EXTREMELY proud of her for not giving up. Because she cried many times, but at no moment she said no. Her reply has always been, I'll try.

She has also found her favorite place in the hospital. It's the 6th floor playroom. This is the place in where she wants to be all day, everyday. She looks forward everyday to morning time to sit on her chair and be hauled up to the 6th floor for hours of fun time. I must say the room is very fun to be inside and there's just about anything to do in there. From painting to puzzles, to toys and video games. Yanking her out of the room is not easy...Lol.

In this picture she was still not talking

In the two weeks she's been here she has seen and done a lot, thanks to Arnold Palmer Hospital who makes sure that the kids are well entertained. Following are a few of the things she's done or people she's met.

 A magician

 Harrison Heath of the Orlando City Team

 Star wars Chewbacca

Her smile is PRICELESS!

Everything happening is hard, even harder for her, but everyday she teaches me a lesson. A lesson of valor and courage, to have faith and hope and to know that the show must go on. Until the next update.

-Jessica

Day of Surgery...

May 4, 2016

Day of surgery.


Waking up at 4:45am, getting ready to head out to be at the hospital by 6am. I have to say that regardless of how anxious and nervous everyone was, we managed to get a good amount of rest. This is the most awaited day in years now, the day my little girl starts to get her Scoliosis fixed. We arrived at the hospital just in time, checked in and waited to be called in. Now, I am not afraid to admit that my anxiousness and worries can really get to me. I just couldn't sit in that waiting room to get called him so I told my husband that I was going to let him take her in and I was going to do my waiting at the hospital chapel. I know, coward of me, I am her mother and should be there for her, but years back when she had her first surgery they had me carry her inside the operating room and place her myself on the bed. I whispered in her ear that everything was going to be ok and mama was with her, all the while they put a mask on her face and by the count of 2 she was out. The way she got torn me apart that after that I was unable to do it again. So every time she gets to be put asleep I ask someone else to do it for me because I just can't handle seeing her like that. Wednesday came and I did it again. My husband sent me a picture of when she was being prepped and they also gave her "sleepy juice" so that putting the IV and getting her in wouldn't be so bad and traumatizing for her.

Prepping her for surgery

I went to the chapel in company of Destinee's twin and my time inside felt like forever. To my surprise surgery only took about 10 to 15 minutes. I get a message from my husband that she was almost done. The hospital has an app that gives you all that info (got to love technology) I head back with my daughter. The doctor came to us and he was pleased with everything. He said that it's going to be long and an adjustment process but he seem confident.The halo tractions were easy to put in and there were no complications, thank the Lord. It actually took longer to wait for her to wake up. We waited between 45 minutes to an hour. After the time of her waking up passed, we were taken through these double doors to see her come out as if you would be waiting for a loved one arriving at the airport, except it was my baby coming out in this large bed, for her tiny body, and her halo vest, among all the cables that surrounded her.

I won't lie it was very impressive seeing my little girl this way. No mother wants to see their child in any kind of way that's hurting them and I wanted to take her place. Even now as I type I can't contain my tears. But, I know this is for her well being and I'm trying to use that to carry me through. After she was given a room and was all set up I see her twin sister exit the room, I go after her. She held her tears until exiting the room so her sister wouldn't see her that way. She couldn't handle seeing Destinee kind of way, understandable. To us, as much as it hurts to see her that way, we know it is for her well being, but for her sister it was torture what they were doing to her other half. Luckily, the sweet counselor lady of the floor realized what was happening and they took Beth for a hospital tour while they explained to her what was happening to Destinee. They gave her teddy bears for her and other to give as gifts to Destinee. They sat her down at the nurses station and had her make some drawings to decorate Destinee's room door.

Still today my Baby A has not been able to go back into the room and see her sister. The impression was big enough but we're hoping with some counseling she can over come this and be able to visit her sister again.

Within a few hours we get word that they are changing Destinee to a different floor. We were, in a way, happy about this because the room we had was very tiny for an extended stay. The new room given to us was definitely more spacious with a bigger bathroom and room for a bed for my husband or I to sleep over. Her first night here was not good at all...obviously. She didn't sleep through the night at all. I'm sure not being in her own bed is one of them, the feeding tube was another, something she can't get used to, then the other one was that she woke up several times making sure she wasn't left alone. I can only hope better nights will come.

Blessings,

Jessica

Monday Check up...

I knew since last week that come Monday May 2nd we already had two doctors appointments. It was for me the beginning of everything. But I had no idea how heavy it was going to really be.
On Monday morning at 10:00am she had her Pulmonary doctor appointment. She was given two breathing tests and the doctor told us that in order for him to give her the go for Wednesday he needed a week to perform all test necessary. We looked at him not being able to give him that permission as Destinee's orthopedic is the one in charge of everything when it comes to her surgery. We did tell him that we agreed with him in performing all test on her. I informed him that the best he could do was to communicate with Dr. Phillips that he will be able to get better answers from him. The pulmonary doctor called Dr. Phillips and he had said that no way, no how, the procedure date could not be changed. The pulmonary doctor told us that he will do the most important test on that day and that we will have results the following day. He set up a cardiology appointment for an echocardiogram at 4pm and the sleep test at 7pm. So our two same day appointment turned in to an all day and night thing.

This was at her cardiology appointment and practically what she was getting done the entire day.

Getting her Echocardiogram

The only time of the day in where she was relaxed until her sleep test time came.

The day was really hectic with going up and down, going home to get a bag ready for her and my husband and finally having lunch to then go back to the hospital. Time passed by and soon enough 7:00pm was on top of us. I have to say that despite everything she's going through we've come across a lot of nice and sweet people. We were taken to the are where the sleep test was going to be performed. It's so happened to be the same are in where I gave birth to them and they were staying in the NICU. I got to show them where mom stayed after they were born and it really got me very emotional. After they were born I stayed in Florida for another 10 months before moving to Ohio so the thought of being back in that very same place never crossed my mind but there we were. We met the nurse in charge of performing the test, he was very sweet, caring and friendly. He talked to her and explained everything to her. He also when quickly and got Destinee a DVD movie to watch, Princess movie, her favorite. I packed her goodies for her to play with along with snacks and drinks and before I left I changed her into her Pjs and while it broke my heart leaving her I knew she was going to sleep soon enough being that she had such a rough and long day. 

Getting set up

Needless to say she was not a happy camper but I was told by my husband that by 10:00pm and some she had finally fallen asleep. They were woken up by 5:00am and soon after they were back home. At that time of the morning I had to give her a bath to remove all the sticky glue like stuff she had all over her hair. And she finally fell back asleep again.

Until the next one...

-Jessica


UPDATE: All test came back good. The sleep test was better than expected.

Destinee's first haircut...

For over a year or so now Destinee has expressed her desire of donating her hair to Wigs for Kids, in her own words "I want them to be happy so I want to give them my hair". Being that Destinee's hair has never been cut since born, I was hesitant in letting her, very selfishly of me. But, Friday the 29th I couldn't say no any longer. Because of the halo vest that she will have on Wednesday having her Rapunzel hair is not going to be of any good to her or her doctors so today she got her wished granted. Between her, her twin and myself we used to be the cousin "It" family.

And today she made a big decision of which I am extremely proud of her. She decided to put someone Else's needs before her own by showing a wonderful and kind gesture. A gesture she didn't think twice making it.

Before

After

Then there's me...

My reaction as I watch her getting her first haircut.

All in all I am very pleased with her decision and seeing her happy face afterward, so content with her new hair as if she was given a new life is most definitely worth it, rewarding and priceless.

Until the next one...

-Jessica

10 years ago...

Hi everyone and welcome to Destinee's Journey. For quite some time now I've been having the urge to write about Destinee. In her short 10 years she's been through a lot and I want to share her journey with everyone. I hope that with this blog others can find hope along their own journey...


My name is Jessica, I am the mother of 3 beautiful girls, a 16 year old and 10 year old twins. This blog is about the youngest of my twins. Let's go back 10 years ago... In the summer of 2005 I find out I am pregnant which was a surprise as my husband and I were not planning on more children. Within 4 months into my pregnancy I find out the most, what was for me, shocking news...I'm pregnant but with twins. I am sister to twin brothers so in my family I grew up with my parents always telling me that twins skip a generation. I always thought...oh that's not happening to me, maybe my kids but not me. If anything my brothers because they are twins. That was the biggest MYTH out there. While the news was shocking and I admit it took me a few weeks to sink in my head, I was thrill and happy to be the mother of twins.

On my following appointment, I got another sonogram. Being pregnant with twins puts you immediately at high risk therefore you get several sonogram a month. So my next sonogram was soon after. On this appointment I find horrific news, my twin girls are in danger. They tell me I have TTTS, Twin to Twin Transfusion Syndrome. I had no clue what that was, all I knew was that the most heartless doctor told me my babies were in jeopardy and their survival chance was none. She clearly said to me, the babies may not make it and that she recommended an abortion and since I was going through it I might as well take the other baby out because with the abortion she was not going to survive the procedure. My ears couldn't believe what this doctor was telling me. The tears were instant and couldn't breath. I stormed out of the sonogram room and walked as fast as I could out of the hospital to catch my breath, my husband following me. After I calmed a bit I went back in and only one nurse stopped me and told me not to worry about it and to trust in God but I admit that in my desperation I heard her but I couldn't believe what she was saying to me.  How can someone tell a mother who can feel her babies in her belly that she has to abort them. It was heart broken but I wasn't going to take that and after a brief talk with my husband he and I decided to get a second opinion. For our next sonogram I was given the head doctor of the obstetric department. This doctor was gentle and amazing. He kindly explained what TTTS was and how to go about it. He recommended me to bed rest until my schedule C-Section.

During the next 4 months I watched my diet, I did limited walking, I did my Christmas shopping and any other sitting on a wheel chair. I made sure I did my part to help my babies. TTTS kept progressing but never to the point of alarm. Around my 8th month I went to my usual appointment but while sitting in the comfortable recliner and the babies heart was being monitor the doctor got alarmed and told me that baby B's heart beat could not be found. Immediately I was sent into an emergency C-Section. I was at a loss and very scared. I had no idea what was coming towards us. But within 30 minutes I was already changing my clothes and being prepared to be taken into the OR. I remember that there was this particular doctor that while he wasn't my doctor he took an interest in me and my pregnancy. I was seen by different doctors during my pregnancy but this one doctor had his chance I believe once, most twice then I never saw him again, until the day of the C-Section. Mind you, this was an emergency and not planned anymore so how did he know I was there, I don't know but he was there. He came to me held my hand and told me that everything was going to be alright and that unfortunately he was not going to be the one performing the C-Section but that he will be assisting the physician. I was pleased with that. He made me feel very at ease. Once I'm all prepared in bed he goes and asked me if I had any special request for him before I was taken in. I told him I did and said "Please tell the doctor doing my cesarean that I don't want to be announced when I am being cut open. To check if I am completely numb but not to tell me because knowing me I will feel that cut" he smiled and told me my wish was granted. Soon after, by the nurse, I was guided and walked myself into the operating room and it was the most cold, creepy and sterile place I've ever seen. But I walked in confident. I was sit up, pillow in between my hands and ready for my spinal anesthesia and let me tell you that it works instantly. They waited a few minutes and just as the doctor promised, I was never told when I was being cut open and everything went well when it came to me. At 8:30 pm and 8:31pm my babies we born. Baby A was 3 lbs 2oz and baby B was 2 lbs and 3oz. When it came to the twins, I don't remember hearing them cry once they were out. I didn't get the full experience moms usually get by having the opportunity to look at their babies before they take them. My babies were taken away immediately and I didn't get to see them. Later on I find out by someone that baby B was born without a heart beat. I can't remember much because while laying down and being cleaned out, I was given something through my IV that made me incredibly sleepy and by then I was in and out of consciousness. For those of you that don't know me, I have a very weak body and anything puts me to sleep and I mean ANYTHING. I currently suffer from Vertigo, at times and even a Anti-vert medication, just one pill will knock me out for at least 2 days. So back to my babies...after my C-Section I was taken to this room in where they had the babies, again, I was in and out and I remember this very vague in my mind. Later on that night my husband had gotten to see the girls and all I was brought was a picture of each of my babies. That's how I met them for the first time.

 Baby A- Bethlisa

Baby B- Destinee

That I remember, I didn't get to see them until 2 days after or a day and a half. I do remember the day I was finally being wheeled in to the NICU to meet my babies. They were both inside an incubator and my first reaction was to see how incredibly tiny they were. I didn't even know if I could touch them from how fragile they looked. My husband had already fed Baby A and even though Baby B had a feeding tube, he was given the chance to feed her as well. I got to hold my babies for the first time and for the first time since they were born I was complete. Now, to not make this post so long as it already is, I will end with this...I left the hospital after 4 days in it but without babies on hand. Baby A stayed in the hospital for another week, while Baby B stayed in the hospital for almost a month. I cried when I left them behind and bringing them home was my happiest day. Our lives ever since they were born has never been the same and they journey was only beginning.

I will continue to share stories about the girls while I update everyone on Destinee's current journey.

God bless everyone!

-Jessica