I'm not alone!

[momma3]

For the last couple days I have been looking around this site and reading some of the posts, then going to individual sites that some of you have listed. All I can say is Thank You! Thank You! I feel like this has been a saving grace for me these last few days. Guess I should explain....I am the proud momma of two beautiful babies, Kaison who is 2 1/2, totally healthy and as onry as any 2 year old!, and my beautiful little Kenlie who is 14 months. When Kenlie was born we were told that she had a heart condition (tetrallogy of fallot) and a cleft palate and low set ears, because of these things together they said they expected there to be a genetic condition, they were right, she was diagnosed with Digeorge syndrome. We did our homework, read up on Digeorge and tetrallogy we knew it was going to be hard but we also knew we could handle it, little did we know so many more things were going to be added! Kenlie began having seizures in May 09, she was sent to St Louis Childrens (again) she would desat so low that they decided to intubate her, she was intubated may 8th, Kaisons 2nd birthday, on may 18th they extubated her, that night she went into cardiac arrest, no pulse for 23 minutes, worst 23 minutes of my life! They were finally able to get her heart beating again and reintubated her but she bought herself a trach due to unexplained airway swelling. It was hard and scary but we managed, she had her heart surgery in June, got through with flying colors, in July she began having more breathing issues, she was just working really hard to breath. She was again admitted to Childrens and on July 22nd she was put on a vent, she has been on one since. She does great on it, we've learned all we were supposed to learn. She has been home since Sept 14th. We have somehow (the grace of God) been able to stay away from the hospital except for many many Drs appts. Every time she gets sick I have this voice in my head saying 'this could be it, she might have to be admitted for this' thankfully that voice has been wrong so far! She starts going to vent clinic in March, they are thinking they might be able to start weaning her off the vent! How awesome would that be! I might actually be able to walk around the house holding my baby, answer the phone, the door while holding my baby, instead of having to put her down first because she is attached to tubes! People with "healthy" babies do not realized the small things that they take for granted, I didn't with Kaison. I think that has been my problem for the past couple days, and she is once again sick (increased secretions, cough) so I'm trying to quiet that stupid voice in my head, but I am just so aggrivated that our "normal' life is now gone. I see my family and friends with their babies, walking around with them, not even thinking about it, wishing they wouldnt be so loud in church when I am praying for the day to hear my baby cry again, talking about buying baby food or what new thing their baby has eaten this week, much better than talking about g-buttons and if the DME co sent enough pediasure for the month! I'm just so frustrated right now, maybe hopefully its just a normal emotion in this kind of situation, we have been doing this for months, I know we can do it, thats not the issue! I'm sorry, I don't know anyones name yet, but I read the post about people asking "how do you do it?", I so agree with you, some times I just want to say "you know, some days I don't know how I do it either, but I do, I have to, I have no choice, she is my daughter and I love her and would do anything for her. It's not like any of us signed up for it! When I was looking around and reading I just felt this sence of relief, there are people out there who are going through the same thing we are going through, feeling the same things we are feeling, living this crazy life that we are living! We are not alone! When you are surrounded by people who have healthy children you begin to feel like you are all alone, no one can understand the trials and difficulties but someone who is going through the same thing. Thank you all so much for sharing so that others know they are not alone! I hope to get to know you all and share my feelings and stories with you! Sorry this has been so long, I had to make myself stop, I could go on and on. No one to talk to for so long makes you a little crazy! As soon as I figure it all out I will post a picture of my beautiful little girl!

[Niff]

s Welcome to the board, Aimee.

The parents and caregivers here have been terrific for me in dealing with my own demons and some days I don't know what I'd do without them. The beauty here is that no one judges and we've all been there at some point in time.

[Momoffive]

Welcome! I am really new here (although my son has had his trach for almost 12 years) and I now regularly wonder why I didn't join sooner. You'll find help, answers, a place to vent, a place where people understand and don't judge. I haven't figured out photos yet either!

[lynn]

Welcome Aimee!! looking forward to getting to know you and Kenlie... this board has been a godsend for me. A place to ask all the stupid questions I come up with(and am too embarrassed to ask the docs).A place to be able to vent to others who get it and dont judge when I am having one of those depressed days and can rejoice with me over the smallest of new skills Joseph learns. Cant wait to see a picture of your daughter

[Ann]

Welcome Aimee. My son spent many, many months in the PICU at St. Louis Children's Hospital. Even though we now live in Arizona, the doctors at SLCH still care for my son - it's a great place! I look forward to getting to know you and Kenlie.

[alizesmom]

Welcome Aimee, to you and your daughters. I love this group for the love, support and advice they give. Karen

[Shylent]

Welcome Aimee - this is really one special group of people ! They certainly make this crazy roller coaster ride much more fun - that is for sure !

Looking forward to getting to know you and your family !

[Kate]

Welcome! I'm glad you found the site-you're right it is a fabulous place that will help you through the darkest times...as someone will know how you feel. What struck me is your thoughts of, "this could be it". My son Mitchell is now 5 and I still get that from time to time. For me, I think it comes with having a dx. of a syndrome that doesn't have good odds. (though we've shattered those) I can't tell you that the thought will go away though I have noticed that with time it does get weaker and you aren't apt to jump to that thought everytime an illness hits...just when the big illnesses hit.
I'm excited to get to know you and see pictures of your sweet daughter. Glad you found the site-it has helped me also realize that I'm not the only one going through this. Feel free to ask anything and everything-someone always seems to know or will point you to where to find the answer. These ladies are great! welcome

[twintotwin]

Welcome Aimee

[JWorthington]

Welcome Aimee! This is a great place for support and advice - there is always someone who has been there, done that, and bought the t-shirt! This life become your normal - just, a different kind of normal. And when you have those dark days - remember, baby steps, take it one day at a time. we all have those days and find support from our friends here.