New to board and really need someone to talk to

[Bj_and_Heathers_mom]

[B]I HAVE A WONDERFUL DAUGHTER Â*THAT IS 2 MONTHS OLD BORN NOV.29,2006. SHE HAS BEEN INTUBATED SINCE BIRTH AND SHE RECIEVED A TRACHE ON DEC 14.2006. SHE HAD A NEMOTHORAX (SPELLING???) AT BIRTH FROM BEING BAGGED TO HARD. THERE IS NO ONE AROUND WHERE I LIVE THAT FEELS COMFORTABLE WITH HER. DOES ANYONE HAVE THE SAME PROBLEM ? I CAN NOT GET ANYONE TO WATCH HER FOR ME. I SIT AND CRY OVER ALL THIS I DO NOT KNOW WHERE TO TURN.I LOVE MY DAUGHTER SO MUCH IT TOOK US 16 YEARS TO GET HER AND NOW THIS. I CAN NOT REALLY TALK TO ANYONE. HAS ANYONE EVEY BEEN TOLD TO KEEP THERE CHILD AWAY FROM EVERYONE? TO NOT TAKE THEM ANYWHERE TO LIKE ISOLATE THEM? THEY TOLD ME TIL RSV SEASON WAS OVER WITH. WE HAVE BEEN DOING EVERYTHING THEY HAVE TOLD US TO AND SHE ENDED UP WITH THE FLU LAST WEEK AND WAS PUT BACK IN THE HOSPITAL WE FINALLY COME HOME AGAIN ON SUNDAY.IT IS LIKE A ROLLER COASTER RIDE AND NOT A FUN ONE EITHER. I KNOW I AM VENTING BUT I CAN NOT HELP IT SHE HAS A FEEDING FUBE NOW WHAT EVER SHE DOES NOT TAKE BY BOTTLE WE HAVE TO NG HER. I UNDERSTAND THERE ARE ALOT MORE CHILDREN WORSE OFF THAN MINE BELIEVE ME I HAVE SEEN WORSE IN THE HOSPITAL BUT SHE IS MY BABY AND IT HURTS SO BAD TO SEE HER THIS WAY SHE DOES NOT CRYDOES IT EVER COME BACK ? WILL SHE EVER TALK? ALL I WANT TO HEAR IS HER CRYAND COO AND LAUGH. MY HUSBAND HEARD HER CRY IN THE DELIVERY ROOM I WAS HAVING AN ANXIETY ATTACK AND DID NOT HEAR HER BUT WHAT I WOULD GIVE TO HEAR HER. HOW WILL PEOPLE LOOK AT HER I JUST HAVE SO MUCH RUNNING THROUGH MY MIND I KNOW IT SOUNDS STUPID AM SORRY I HAVE VENTED SO LONG I JUST NEED SOMEWHERE WHERE PEOPLE KNOW WHAT I AM GOING THROUGH Â* http://www.tracheostomy.com/iB_html/non-cgi/emoticons/tears.gif PLEASE IF SOMEONE HAS THE TIME TO TALK TO ME I WOULD APPRECIATE IT .MY DAUGHTER HAS A TRACHE Â*AS FAR AS WE KNOW SHE HAS NOTHING ELSE WE HAVE A DOCTORS APPOINTMENT NEXT WEEK IS THERE ANY ???? I NEED TO ASK?THANK YOU ALL IN ADVANCE...

[Dylansmom]

Hello-

Welcome to the boards!! Here we can help you and support you when your feeling down. We all have our moments at one time or another.

Do you have home nursing or respite care so you can get out of the house? And if your doctors do not want your daughter around other people/children for now, what about car rides- just for fun, change both of your surroundings for awhile.

When my son came home, I just decidied that he was going to be as normal as possible & enjoy life to the fullest like any other child- I did not know how long he was going to live- I took him everywhere I went, church, grocery store, shopping, library. I know that for now maybe keeping your daughter away from children might be best but that doesn't have to be forever. They are children and need to enjoy life like everyother baby/toddler/child.

Can you take time away while your husband watches her. Just time for you to relax. Sometimes I find I need to find within myself the strength to go on, maybe a short shopping trip, 15 min. outside for a walk.

Keep your head up and keep turning to us~ We'll be here for you.

With Love-
Brittany

[T-bone]

Here is a big hug for you mom. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif We have all been where you are. We all know how scary and lonely it can be.
Brittany is right about asking for nursing care. Talk to your doctor about that.
Just take it one day at a time. It does get easier.
Not hearing my daughter bothered me so much as well. At 6 months of age she was given a speaking valve, and we were able to hear her. She is now 6 and is still trached, (wow) she goes for speech therapy, but she talks very well and trust me she is LOUD. LOL
Make people wash their hands when they come in. Hand sanitizer will be your new best friend. We also took Abby everywhere.
http://www.tracheostomy.com/iB_html/non-cgi/emoticons/biggrin.gif

Good luck, and welcome to the board.
Tess http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif

[Doug-Iowa]

Hello and welcome to the boards. My wife Jarita and I also had to rely solely on nursing care for any break we got. We simply had no one else that we trusted enough to take care of our son. Most family members were to scared to even try to watch him. Most folk are not familiar with trached kids, even most nurses. Jarita and I live in Iowa and have met a few folks with trached children since we went through it. If you are close to Phnx AZ there is a fantastic foundation there that offers parents a break from there life of care for their children.

Jarita and I waited for 13.5 years for Mason to arrive in our life and then we thought why us when Mason developed his breathing trouble. We found out the answer was Why not us. We were the perfect parents to take care of him and get him through his problems. I am sure you were hand picked as well to take care of your daughter because you can handle it. We will keep you and your family in our prayers. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/pray.gif

[lovemymak]

Welcome to the boards! I hope you are able to find a lot of support here. I know this is very difficult for you. It is hard for friends and family to be supportive and "helpful" in the beginning, because they are also going through shock. They are probably afraid of hurting your baby or being responsible if something happens to her.

Whether or not you should take your baby out into public during RSV season I think depends on what kind of risk your child has. We never took Keturah out during the first RSV season, and she still got it! It was very severe. We now pick and choose where she will go and we try to avoid crowds, even though she is 2. She still catches things very easily.

I agree that you need and deserve nursing care. As far as her Dr's appt....who is she seeing? Why did she need to be intubated at birth? She got the nemothorax from being bagged too hard, but do the Dr's know what condition she has that requires her having a trach?

Here's a big hug! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif Pm me anytime if you need someone to talk to or vent!

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif Sarah

[JWorthington]

Hi and welcome. Here's a big cyber hug for you http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif . I am sorry you are feeling so low. It is not easy taking care of a child with a trach and we all have times when we are unable to cope. I hope you can talk to your doctor about getting some nursing care, even if it is just a few hours a week, so you can get a break. Can you go and have a long soak in the bath when your dh comes home from work?
We only kept Sam in the first winter he was trached, though we do avoid crowded areas unless absolutely necessary in the cold and flu season. the rest of the time we just try and do what any other family does. I would not risk leaving Sam with anyone who wasn't properly trained though.
I hope your daughter can wear a speaking valve in the future then you can hear her voice. It is very hard when they are silent. Sam does not tolerate a pmv, and it makes me sad sometimes that I can't hear him when he cries (mind you, temper tantrums aren't as effective when they can't really holler!!)
Good luck http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif Keep us up to date on things with you. I hope you can get some support.

Love Julie

[sandra]

Welcome. Yes, we kept Brian isolated through the RSV seasons at first. He still got sick, but it could have been more frequently, I guess.

I don't have any advice, but wanted to welcome you and tell you to hang in there. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif

[madelyn and rynns mom]

Welcome to the Boards!!!! And Congrats on your beautiful baby!!!! You'll find lots of friends here!!

Kris http://www.tracheostomy.com/iB_html/non-cgi/emoticons/inlove.gif

[Hannah&Jacobsmommy]

welcome.....Big http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif we to use nurse's to get out of the house. You will allways find people here that know what life is like. I love this board.
Trina

[inam1014]

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif Welcome! This is a great place to come to when it all seems to much http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif

[Missy]

Hello and welcome to the boards!!

[liz]

Hi New Mom,
First of all, congratulations on the birth of your beautiful daughter. I can tell by your post that she is a joy and that you love her so much. Your post brings up so many issues that most (I would venture to say all) of us have faced.

1) Nursing/babysitting. You do need to have someone who is trained in trach care to watch her. A nurse is best. Our nurse practitioner at the hospital trained my parents and some trusted adults to handle emergency trach care so they could watch my son occasionally. Do talk to your doctor about regular nursing with an agency. This will all take some time and planning, but soon you will be able to leave her with someone competent.

2) Taking your baby out. It's probably best to keep your baby from crowds or lots of kids. Some of these respiratory viruses are really awful. But you can go on walks and car rides, maybe shopping and to the park when she gets a bit older. This winter has really been tough for our family, too. Lots of stuff going around.

3) Looking different. Well, people will look with the trach. I usually just ignore, or smile back and keep it light and reassuring. Mostly people are curious and want to know that the baby is ok. My son looks REALLY different (he has a facial syndrome). He is three now, goes to school, has tons of friends and is invited to every birthday party. He is adorable to me and everyone who knows him - he even thinks he is adorable and loves to look at himself in the mirror!

4) Talking/developing. She will find her own schedule to talk/communicate and reach milestones. You and your husband will celebrate every one, even if it takes a little longer or she gets there a different way (for example, maybe she will learn to sign before she talks).

Life will not be super easy with this baby, but she will teach you a lot about yourself and those who love her. You are on the first steps of this complicated journey. Good luck, be patient, be strong, be persistent. You will do great.

Liz

[Isaac'sMomandDad]

Hang in there! The other posters gave some wonderful advice.

We also recently came home with a two month old with a trach, he was on a feeding tube (ng) at first, but we were able to "wean" him from that.

I remember grieving as well, and I do still have my days, but it is so wonderful to be home instead of in the hospital, and we feel so blessed with our son that we look on him as a gift.

Answers are different for different families, we don't have nursing or daycare, but my husband and I try to give each other breaks, even to get out to the grocery store while he watches Isaac can be very welcome.
Remember, you have to take care of yourself to take care of your family.

Lara

[Melisande]

Welcome to the boards! It is tough at first. You should be able to get some resources for assistance with your baby with a trach. There are waivers in most states for children with different levels of medical needs. There are also special needs daycares in larger cities.

There is also a vaccination for RSV that you should receive for at least the first 2 years with your baby with a trach. That vaccine is called Synagis.

There may be others who have other ideas.

[Whitney]

Welcome. I am sorry things are so overwhelming for you right now. It is hard when everything feels like it is crashing in around you...

Talk with your doctor about getting some nursing coverage. If you have Medicaid, you should definitely get some nursing coverage or respite care. If you don't have Medicaid, inquire with your early intervention coordinator if they have any programs of respite available (our local group did/does). As for staying "isolated", it is something we diligently watched. We stayed home for the flu/cold season. Alex has never had the flu or rsv (and neither has Aidan). To this day, I am glad we did what we did although I did go quite stir crazy. We went outside on walks as much as we could and I found this site at that same time. When things are right, there are devices that you can attach to the trach that will allow you to hear your baby. You can also ask your doctor at the next visit (it is called a PMV). Lastly, like Melisande said, make sure you are getting Synagis shots. It helps give you an immune boost to fight off RSV...

Welcome once again and I hope you can find some ways to get a little bit of a break... Call your doctor if needed and ask about nursing tomorrow/today. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif http://www.tracheostomy.com/iB_html/non-cgi/emoticons/rose.gif

[TommysDad]

Our son was trached at birth and is now 6 months old. He is also on a ventilator. It can all be overwhelming. As one mom said, often people say why me? And like they said, the real answer is why not you. God picked you for a special child for a reason. We have been keeping people away from Tommy in the hospital for fear of getting him sick and delaying is comming home. We plan to be diligent in isolating him at critical times to avoid illness. But we also want to do what we can to give him a normal life. There is an odd balance there. If you need someone to talk to, send me a message, and I will do my best to answer questions for you.

Our prayers are with you.

[Alex's mom]

Hi and welcome

I know I'm just repeating what the others have said. It is really hard for us all sometimes.

My daughter is 10 months old and we do not take her out or expose her to other children. Everyone who comes over washes up and uses hand sanitizer.

And yes, some people tend to back off and are a little nervous about handling a baby w/so much stuff going on. They either get used to it once they are more comfortable, or it is just one less person handling her, and less germs she's exposed to. I personally don't leave her with anyone but one specific nurse and my husband. That keeps me in the house more than I would like but that's ok for now. I'm REALLY looking forward to spring and summer this year.

I'm so sorry your having such a hard time right now. I'm sending some hugs and wishes things will get better. http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif

[Evy]

Hi,
To have a 2 month old with a trach and have that baby home already is quite unusual. Most babies here have been in the hospital many, many months after birth. With my grandson, he was born in July 2003 and only came home at the end of January 2004, 6 weeks after getting his trach. You must be a fast learner regarding trach care. You've already gotten good advice from everyone but I would repeat to stay away from people as much as possible during RSV season. Good luck!

PS - the ALL caps on your post drove me a little crazy. I know, I must be irritable today - sorry.

Evy

[Bj_and_Heathers_mom]

thank you all very much for the replies they are all helpful I thought maybe I was the only one having to stay in. I am sorry for the caps i will remember from now on bout them. To answer some questions. We are seeing Dr.Valantino at UK Clinic across from UK Childrens Hospital in Lexington,KY. Whydid she need trache? Ummmm they are saying something about everytime she would try to cry or she would get mad her vocal cords would cut off her wind pipe. Does that make since? OK the speaking valve can you still us it while on the humidifier? They want her on the humidifier 24/7. The nurse thing I have checked and what i can find out there is none here but I am gonna check with her ped doctor tomorrow.She is taking the RSV shot already. I have to pay out the butt for it in the end but we are getting it.My husband has insurance through his work place . They aid I could not get a state card cause of income. i can possibly get a spin down card after the bills get so much but they could not promise me that I would get it.Another question how do you get people to see that she is just like other kids just comes with a few extra accessories? So will hold her they will feed her but when she coughs or sneezes they want to get rid of her. i understand they are afraid. We even invited them to come and watch us change her trache so they would feel more comfortable but they say oh no I do not think I could handle that. How do you change there minds? But I want to thank everyone for there support I look forward to chatting with all of you. I did get to go to the grocery store last night but I was afraid dh would fall asleep that I rushed home.He leaves the house at like 4 am and gets home around 6 pm so really there is no help from him. He is so tired when he comes in. He tries to spend time with both kids but I do understand he is tired and works.So I am gonna start laying down for a bit when he comes home in the evening if possible where is on 2 hour feeding. I do not get much sleep and it is catching up with me not fast but I can feel it more everyday. But again thanks ev1...

[Jacob's Mom]

Quote[/b] (Bj_and_Heathers_mom @ Feb. 08 2007,10:22)]Another question how do you get people to see that she is just like other kids just comes with a few extra accessories?
This can be tough for some people to ever get past. My son is 5 and we still have family members who are "scared". It is just a natural reaction some people have. Just educate them as much as possible, and no matter what others do, YOU always try to treat your baby like a normal baby.

I'm sorry you are so tired. We didn't have nursing when my son came home at 6 weeks old, and I too was extremely tired and exhausted most of the time. This may not help you now, but it DOES get easier.

Hang in there http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif

[CalebsMommy]

Welcome! I just recently found this site also, but my son is 2. It seems like a place where you can find a lot of support and just vent when you need to.

As far as RSV there is a monthly shot called synagis that your doctor can prescribe. Of course this doesnÂ’t protect her from everything else. Like many people have already said though we went everywhere anyways so that Caleb could have as normal of a life as possible and we have been lucky that he has been relatively healthy.

We also had nursing in the beginning and I don't know how we would have survived without it. We decided a few months ago to get rid of the nurses on a daily basis but that was a very personal choice.

My family is scared to death of helping out with Caleb and so I completely understand the feeling of being alone. Unfortunately many people will never get over the differences but there are so many people that will and in the end it won't matter b/c you love your daughter and know how special she is!
http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif

[McKenna&clan]

Welcome to our little island of respite! I have been on the boards since my gal was 1 year old and I have to say that everyone here will try to help, listen, laugh and loathe with you in every angle of this crazy life we have. Infact, 99% of the parents here have posted the exact same paragraph with the same questions, worries and concerns. You're not alone.

I think of everything you mentioned, the isolation is the worst. It's a different isolation because you are no longer in the same social circles, no longer to can do everything thing that you did...but there are some things that are still the same. You are still your children's mother and know what is best for them. Rely on your common sense and instincts. I know what I'm saying sounds so out of league right now...but take it a day at a time. So baby got home on Sunday from the hospital having the flu. Going outside is not a great idea...and you will learn ALOT about winter season and children having trachs, flu, cold, RSV season. Your child's room may look like a hosptial room. Put up a few Disney or Sesame Street posters that you can buy at Walmart. Your child will love looking at them. Do you have a mobile for the crib...a tape/CD player to play smoothing music? Get a colorful rug and find different textures for your child to play with. Find a loose routine for the day...reading to her, snuggle time, sponge bath time (you'll have lots of questions there!), outside time (even if it's just sittin on the porch), and don't forget the nap time for you and her!!! It will help remind you (and others) she is still just a baby...a baby that breathes out of her neck.

On that note, people often are, for lack of a better word, suprised, uneducated and shocked. You are a protective parent and it hurts to see those stares and then people avoiding you and your child. It's OK...most of those folks don't mean to offend, they just don't know what to do. A lot of people will take their "que's" from you. In the store if my daughter got a stare...oh yes we did!!!!....I would take her little hand and wave at the adults and children and say "Hello, my name's McKenna". This would usually melt a stare into a smile and a child or an adult would edge closer, ask a question and then learn a little and so would I.

Look to see what you can do to make your own life easier...contact your church group in your area, contact social services and any early intervention programs as mentioned before. A good majority of the medicaid "wavier" programs from state to state depend on the child's income and not their parents. DIG, DIG and DIG!

You said you are in KY...post an inquiry asking if other families on this board are near your area and have any suggestions.\

Good Luck...you will find a wealth of information here. I found it very comforting reading through Aaron's Kids...the stories may be different, but we all feel the same.

Janet & Mac http://www.tracheostomy.com/iB_html/non-cgi/emoticons/hug.gif

[Missy]

We are in Kentucky and didn't qualify for assistance based on my husband's income either. However, there is a waiver program that is not based on income, it's based on disability. We don't get any financial assistance, only the Medical card, which qualifies you for nursing. That being said, you will need to ask her doctor for an order for a home visit from an RN from a home-health nursing agency. They will then do the paperwork to qualify you for the waiver program. Hope this helps!!

On another note, we started out at the UK Clinic, also. They are really not much help when it comes to this stuff! Honestly, they weren't much help to us at all. Hope your luck is better with them! If I can be of any more help, please feel free to contact me!

http://www.tracheostomy.com/iB_html/non-cgi/emoticons/luck.gif Missy