just need a helping hand

[izemmom]

Hi everyone. I'm pretty new here and haven't posted much, but I just need a little morale booster and this seems like the best place to get it. I have a 5 week ole daughter, Emily, with cf and a three year old with out. Maybe I'm just tired from the every three hour feedings, or the constant diaper changes or the spipt ups or the laundry or the fact that the 3yo is potty training so she's contributing to poop and pee issues and the laundry...or maybe the reality of the cf diagnosis is finally hitting home. Whatever the case, I'm just feeling really overwhelmed and down. Not depressed. I've been there and this is not the same. I can't function when I'm depressed and I'm doing ok right now. What I'm looking for, I guess, are your strategies for getting through this adjustment period. I worry constantly that all the stress I'm feeling will negatrively effect Emily's adjustment, bonding, development, etc. When Isabelle was her age, we regularly played on the floor with her, gave her tummy time, did "learning things." We don't seem to do that with Emily, primarily because she spits up tons if she's on her back or her tummy. I don't know. Maybe it's silly to worry about this. Anyway, for those of you who have been there, what got you through? Also, she has had a nasty case of enzyme induced diaper rash (raw and bleeding) almost since starting on Creon. We give her "Open Air" time every day under a heat lamp, but it's not working like it used to. Have you found anything that worked wonders?

Tami

mom to Emily 5 wk w/cf and Isabelle 3 yo no cf

 

[anonymous]

Hi Tami
Congratulations on having a new baby!!!! I am also a mother of 3 children, I can remember when i just had 1 child and i still seemed so full of energy, i was also much younger, well anyway my 2ne daughter was born with CF. It was very overwhelming.... I can remember not knowing how i felt.... I was sad, depressed but so very happy to have this wonderful, beautiful baby girl, I remember always worrying about my daughter and how CF was going to affect her precious life. VERY OVERWHELMING..... My son was potty trained when Kait came along so i didn't have that to deal with also. There are still times when i get depressed if i let CF take over our lives.... My husband and I have taught Kait to not let CF stop her from doing what she wants in her life, I try to keep that in mind when i start worrying . My Kait is 9 yrs old and is pretty healthy, she is very active and really enjoys her life.

I think that it really hasn't been that long since you have given birth and you are going to be tired, no matter what!!! It may take a little longer to bounce back to your normal self... 2nd child and also having treatments and
more doctor visits to take care of. Give yourself a little more time and remember you can't do everything yourself, ask for help from your family and friends.

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[julie]

Sorry to hear how you are feeling Tami, but it's nice that you are able to share.

About the diaper rash, I have seen a post around here (I'm going to go searching) for a homemade DIAPER WIPE recipe. Apparently, and it makes sense, the alcohol in the wipes just continue to dry out and irritate a diaper rash. You could use a rag with water vice the wipes with alcohol but I have hard this regimene works better and you can even put a little "strip" of the homemade wipes in the base of the diaper too, kind of like you would with a rash cream. I'll look for it, or if someone knows what I am talking about, can you help me get this info....

As far as feeling overwhelmed, I am not a parent, but rather a wife to a CFer so I can't relate firsthand or offer what "worked for me" but I just wanted to put some ideas out there for you. Do either of your children qualify for state medical? Many states offer an "in home supportive service" (it's named different in various states) and that can give you some assistance with one or both of your children. Allow you to take a nap, go to the gorcery store without children, allow you and your signifigant other to go somewhere. Some even offer visiting nurses that can assist with treatments.

There are lots of other new parents here that will have some better/more specific advice for you.

Welcome to the site though and props for your post, I know some can offer advice!

 

[anonymous]

Hi Tami,

I have a 3 year old daughter with CF and a 7 year old son without. Having 2 children is hard for anyone but throw a CF diagnosis in the mix and there is just another level of responsibility as well as worry. I continually remind myself that whatever I will let my older son without CF do/attempt to do in life that my daughter with Cf will have that oppurtunity as well. This includes:takes toddler classes, playgroup, friends, swimming, sledding, watching tv, getting punished; I guess pretty anything any child does(except scuba diving:>)

My daughter with CF has a fun happy life. People always look so surprised when I say she has Cf.

My son without Cf was a big "spitter" when he was a baby. My daughter with CF was not a big spitter as a baby. Weird huh,

About the diaper rash; My daughter had a terrible diaper rash when she was a baby(about your daughter's age. One doctor thought it was the enzyme related rash when it was really a yeast infection(she was on antibiotics after she was born). If your daughter has recently been on antibiotics it's worthwhile making sure it's not yeast.

If the diaper rash is infact enzyme related, we used zinc oxide ointment on her but. I got a huge jar at BJ's or Costco at the pharmacy section; I think it's like 40% zinc oxide. Just clean her bum really well between dipaer changes then apply the zinc oxide and it acts as a barrier to her skin to let it heal.


That's all I can think of now.

Rebecca(mom to SAmmy 7 no CF and MAggie 3 with CF)

 

[anonymous]

Congrats on the baby! As for the diaper rash, our Dr. recommended something called Triple Paste. The pharmacy had to order it, though it's not prescription, but it really did the trick. I applied it religeously at every diaper change, even after the rash would clear up, as a propholactic measure. It seemed to work much better than the Balmex/Desitin type products I used on my non CFer.

As for the rest, well, I think it's naturel that the second (and subsequent) children get "short changed" as far as amount of time spent focussing solely on them. There's only so much time in a day,luckily love has an infinite capacity to expand. That is what counts!

Good luck-boy, I remember (vaguely!) those sleep deprived days!

 

[lovemygirl]

For the diaper rash I posted on another message a recipe for baby wipes. I can tell you it made a huge difference for us and really works; in fact I found it on another CF site.
For coping it is ok to feel overwhelmed and sad and we found the first year to be the hardest. Try reading the poem on the site attached. Sometimes when I am feeling down it helps me put things into perspective. When I was feeling down someone sent this to me (from this forum).
http://www.our-kids.org/Archives/Holland.html

 

[anonymous]

Sorry you're having a bad day... those feelings suck!

I felt this way with our daughter because she had a lot of reflux. Have you talked to the docs about Prevacid? That seems to help the reflux a lot, but is expensive. Also... I decided... at least some days that the interaction was as important as the calories... so I took my chances and did the tummy/play time even though every now and then she spit up. Truth is that she didn't spit as much during these times as I thought she would.

Also, I would second the Triple Paste... that stuff works like a charm... much better than the homemade mixes and the Balmex/Desitin. They do sell it in the baby section at Walgreens without special ordering...if you have that chain nearby.

We're rooting for you! Hang in there!

 

[Seana30]

Tami,I have 3 children......Lauren 14, no Cf.......Courtney 13, with CF.......and Cameron 10, no CF.  Courtney was not diagnosed till she was 10 years old.  I remember the feelings I had right after diagnoses.  I think I had every possible emotion running through me for the first few months.......and the worst was that I felt no one could possibly understand what I was going through.Two days after diagnoses I was talking to my mother on the phone and told her that I felt bad because I was questioning why God had made this happen to my family.  She got so angry with me and said "Seana, everyone is having to walk on eggshells around you, you just need to handle it".  I couldn't believe she said this!  I was so angry at her I didn't speak to her for weeks after that.  It was then that I got on the computer and looked for internet sites with people that could understand what I was going through.  Although some people can be very rude and judgemental on these sites, it is so helpful to come here on a bad day and know that most people are going to understand where you are coming from.My oldest daughter ended up in the emergency room last night with a 105 fever and was having trouble breathing.  Most people cannot understand that not only was I worried about her, but I also had the HUGE worry of whatever she had, she could pass on to Courtney.  If Courtney was to get this illness I don't know if her little body could handle it.  The nice thing is I know I can come here and people will know EXACTLY what I am talking about.You hang in there........if you ever need anyone to talk to please e-mail me.  You and your family are in my thoughts!Seana<A href="mailto:jlofton@elp.rr.com">jlofton@elp.rr.com</A>

 

[anonymous]

Tami,
My son was 3 weeks old when my 18 month old daughter was diagnosed w/CF. I was devastated but like you said you don't even have time to be depressed! What got me through those rough times and still does, is having time to myself. Whether it is going to the grocery store w/o kids or taking a 30 minute bath, you have to have some time to yourself. Don't feel guilty for not having the same bonding time with your daughter, because all parents go through this guilt with their second child even ones w/o CF kids. I feel sorry for my now 10 month old son because he is never going to get the same amount of attention as my daughter, but I will always love him just as much. That is something you have to deal with when it comes to CF. I promise that things will get better, just learn to deal with the days one at a time. And get that new baby girl of yours sleeping through the night and things will be a whole lot better I bet! Good luck with everything and we are here for you if you need us!

 

[lflatford]

That was me up above. Not logged in once again!

 

[anonymous]

I did the "homemade" wipes. Since it was 91/2 yr ago, I can't remember the amounts. I can tell you the contents and you can just experiement with it. I used Bounty towels, J&J baby soap and baby oil. That's it. The oil was to "cut the soap. I used nursing/nipple ointment on her butt, worked wonders.

 

[izemmom]

Thanks everyone! Your responses were exactly what I needed! It is so wonderful to have people who know exactly how hard this is. Emily cultured positive for psuedomonas, so I'm sure I'll be back with questions on the nebulizer and all of the related issues! Thanks again!

Tami

 

[HD]

It is quite a challange. My daughter was three when Ian was diagnosed at 6 months. It is so hard sometimes to care for both when you are not sure if you can emotionally care for yourself! Make sure you do care for yourself and your spouse if you have one. Couples counseling was great for us at the time! As far as diaper rash, if you are breastfeeding, breasmilk works wonders!