Day 1: of feeding tube awareness week

       Today is Day 1 of feeding tube awareness week. So in honor of that I am going to share about Chloe and her feeding tube everyday of the week using the provided topics. I am really excited about being apart of the 3rd annual feeding tube awareness week this year, although Chloe has had a feeding tube for  2 1/2 years I was unaware that such a week existed.


Today's Topic:
Tell your story. Educate others about what life is like with a feeding tube and with your child’s/family member’s/your medical condition. Why does your child/Why do you have a tube?

Life with a child with a feeding tube is not a bad life like some might think, its just different. At first it was scary, nerve racking, hard, and hard to talk about. Now it can still be all of those things just in a different way. When Chloe was 2 months old and the doctors told us Chloe would have to have a feeding tube it was hard to accept. I thought how will we ever be a normal family and go out and do normal things and what will people think or say about her feeding tube and how will Chloe react to not eating by mouth? Will she feel deprived of food or mad/sad/ angry that we are all eating and she is not? Now, it is a completely different story. Now I have accepted it to the fullest. I mean yes of course I would like for her to one day eat by mouth but she will get there in her own time and if not then it is what it is. It is still scary and nerve racking because I am just worried of it getting pulled out as it has been a few times but it happens and she is okay. She actually laughs when it happens. Chloe's feeding tube is apart of Chloe and anything that is apart of Chloe I love. We are not a normal family and never will be. We will always be a special needs family and are ok with that. We were given this life because we were meant to have it. What is a normal family anyway? and we do get to do normal things, we just do it in a different way. And as for what others might say or think, that really is not important at all and wouldn't bother me the least bit if you didn't approve. Chloe was so young when she got her tube that she doesn't know anything else so it doesn't bother her at all.

It is tough sometimes to feed her when we are out doing things but we manage and have figured out what works best for us. Plus she gets to wear a pretty cool backpack while she eats, now that she is big enough to hold it. I just try to embrace it as much as possible.


So Chloe has 19.3 micro deletion (a tiny little piece of her 19th chromosome is missing). So with this it causes her low muscle tone, which then was the cause to her aspiration, which is why she has the feeding tube. As of May of 2012 she was cleared to eat again, so she was no longer aspirating while drinking/ eating but since she had gone so long without eating by mouth she no longer is accepting of it. She is very sensitive when it come to other people putting any type of object, such as a spoon or food into her mouth. It probably doesn't help that she is teething right now to. So it is a long on going process to try to feed her food by mouth. This syndrome also causes her to have alot of upper respiratory issues and she has sleep apnea so at night she usually needs some oxygen to keep her saturation's up. Because of her low muscle tone she has to work ALOT harder then most children to do very simple things that cause naturally to others.

Okay so that was a pretty long answer to todays topic. They probably wont all be this long.
Check in for the rest of the week to ready about the other topics.

HAPPY FEEDING TUBE AWARENESS WEEK!!!!

                          This is Chloe when she was only 2 months old when she first got her NG tube. She had her NG tube for about 8 months before she got her Gtube.

One year ago today.....

 Today is a good day!!

As I watch my kids all sit together playing and laughing together I am so greatful to have them all here with me alive, safe, healthy and happy. For some parents seeing there kids play is just part of their normal day to day life but for me this is a miracle, this is a blessing. This is all I need to be happy.

One year ago today was a very scary day. A day that my world almost crashed to the ground. A day that I will never forget. One year ago today I thought I was going to loose my sweet angel Chloe. It was the scariest day of my life and it is a miracle that she is with us today.

After spending most of the middle of the night in the E.R Chloe was admitted into the PICU at the St. Alexius Medial Center. Chloe was in respiratory distress from aspirating her own vomit while wearing her CPAP mask . A little while after Chloe was admitted the nurse was in asking us about Chloe's history and in a matter of a second Chloe had gone into respiratory failure. The nurse called a code blue and in a moment there were at least a dozen doctors and nurses in the room working on reviving Chloe. Her saturation's and heart rate quickly went down to almost nothing, I remember seeing her heart rate go down as low as 4. It was so surreal. They intubated  her and eventually got her stable with the help of a breathing machine.

It was terrible as I watch all of this, of course only the worst going through my head. Her body just went lifeless and there was nothing I could do. It was the worst moment of my life but once I knew she was going to be ok that was was turned into the best moment I have ever had. Man there is no words that can explain either of those moments.

After a few horrible days Chloe started to fight the machines which was a good sign. It meant that she might be ready to breath on her own so they slowly took her off of the respirator and she did great. After she got over some other infections and was completely stable we were able to take her home on Valentine's Day.

Chloe is a fighter. She is such a  strong and courageous little girl that does not give up. I am so proud of how far she has come and how strong she has gotten since then. I am just love her so much !!!!

She is my Angel!

Just loving my kids

                   As I sit and watch my kids play I cant help to feel blessed. I am so extremely in love wit them it is insane.  I could just watch them all day long, they are so interesting. Well all kids are interesting really but of course I share that special bond with my own.

 Their purity and innocents is amazing. The fact that I am their mother and they are mine to teach, learn from, care for, protect, encourage, watch grow and so much more is just the most wonderful thing in the world. Every smile from them just melts my heart.

Happy moments are the best!!!!!

Jayden loves to giggle a dance

 

 

 

 Summer making Jayden giggle

(6 Months Old)

 

 

 

Jayden dancing to his own voice (6 months old)

Jumps 'N' Jiggles and the amazing Carousel Room

 

So we finally made it over to a place called Jumps 'N' Jiggles in Elk Grove. The kids loved it. Its small and enclosed, which is nice and easy to watch the little one. They have this huge amazing carousel that is surround by a bunch of tables that you can sit and eat snacks or lunch on. We went to check it out because we are probably going to have Chloe's 3rd birthday party there. Not until August but its never to early to start planning. We will definitely be going back there to hang out and have the kids play.

 
                                              Summer eating a snack

                                
                                                          Jayden eating yogurt

                                            Go Chloe! Up the stairs she goes.

                                              Summer road this carousel for 20 times in a row!

 

Let is Snow

        Brrrr......So cold!!! So it finally hit us. The cold is here and looks like its going to stay. Although it makes me really nervous when it is warm in the winter and there is no snow on the ground, I really do enjoy it. The cold weather sucks. I know I know then why do I live in Illinois. I should be used to it by now, right. I don't thing I will ever get used to it. It hurts, it makes my head hurt my hands dry, my lips chapped. It also takes 20 extra minutes to get all the kids in the car with all the shoe tieing, jackets, hats, gloves etc. but I can handle all that, I guess. The worst part of it is the way Chloe's health goes from pretty good to horrible. Thank goodness right now she is healthy but man does it just put a toll on her.

The only thing I really want out of this winter is at least one snow day. Please let it snow, Not to bad where its mountains of snow or really dangerous on the roads, but enough where we can take Summer out to built a snow man, have snow ball fights, make snow angels and go sledding. She has been asking all winter for this. Since now she is old enough to do it plus there was not enough snow last year to do it. So this year everyday she asks about the snow and was so excited the one day it did snow a tiny bit but unfortunately it was not enough.

Okay my rant about the cold and snow is over....I just had to get that out.

Knock on wood

 So I think the illness is finally out of the house, knock on wood. Starting on the 1st of the year Chloe started getting really sick . She had a horrible caught and cold. Her saturation's were constantly dropping, she was requiring at least 4 liters of oxygen. This lasted about 2 weeks but with the help of antibiotics, breathing treatments, suctioning, sleep (for Chloe) and lots of love we were able to get through it here at home and not in the hospital. Thankfully she is feeling better now and back to her regular self. She was supposed to have surgery on Friday to get her ear tubes replaced and a bronchcoscopy but due to the caught and antibiotics her ENT decided to hold off until February 25, so we just really need to try to keep her well so she can have the surgery then and get it over with.

Happy New Year!!

Happy New Years.

Wow the holiday season is finally coming to an end and what a holiday season it was. My family and I were very lucky to have such a nice, semi- relaxing, joyful and healthy holiday season. I feel so blessed everyday for everything and everybody that I have in my life.

I had such a fun New Years Eve and day. It started off getting the kids up and dressed, of course right after I got Chloe dressed she vomited all over her crib and herself. so I bath her and redress her as usual (since this has been happening probably at least 5 of the 7 mornings of the week.) Then off  I go with the kiddo's, my dad a.k.a Papa and My sister and nephew to the Itzy Bitzy New Years Eve Countdown. It was allot of fun they had a bunch of activities for the kids and a balloon drop. The kids loved it, which means I love it. I love nothing more in the world then see my kids happy and smiling.



                                                      Summer on a two wheeler

 

 

Miss Chloe having fun on a little car

 

                                                             Papa and Jayden

                                               My sister Colleen and my nephew Christian

Then later that night we had some of our friends over with all their children to celebrate the new year. So we had a 10 and 7 year old and then 7 kids 4 years and younger. It was a little crazy but definitely fun. Especially since sometimes we don't have a lot of time to see friends.


Then we just relaxed and watched movies and played games and stuff on new years day, we had an awesome steak dinner that night.

                              My little princesses wearing their Happy New Years tiara's
                                                                        Summer

 

                                                                    Chloe

I actually thought we might be spending new years day in the emergency room. Chloe was pretty sick. Nights have been especially hard for about the last 5 nights with her O2 saturation's dropping every few minutes and that's even with 3 Liters of Oxygen. SO that morning she had a fever of 102.9 and was very lethargic and exhausted. She is like a roller coaster with her breathing so sometimes its hard to know if she is just having an episode, an infection or what sit is. Some nights she works so hard at breathing and others not as much. Last night was also bad. I am really hoping tonight is better. The beeping of the machine and the getting up several times a night can really get irritating and exhausting. Especially since Jayden is still waking up a few times a night to eat. I feel like there might be something obstructing her airway. She will be having surgery next Friday to get her ear tubes replaced for the 3rd time and for another bronchcoscopy, they will also revise her adenoids while they are in there if she needs it. So I am hoping this will help her breathing issues as it has in the past.

Summer and Jayden right by Chloe's side while she isent feeling well.
(lol.....Jayden likes to play with Chloe's pulse ox machine)



until next time....

night nite!!

kisses, loves and hugs<3