Sleep advice when baby can't cry

[penny]

Hi Everyone,
My name is Penny Coleman. My daughter Abby has TOF and just turned 8! My question if for a friend who lives in Texas. She has twins and one has Dilated Cardiomyopothy. They cannot allow her to cry any more that possible. ( many of us have dealt with this ) . But, nighttime sleep is becoming a real crisis for them. The Mom has to hold her all night or she wakes up screaming. The Mom is getting very little sleep and still has the other twin to take care of. She is begging for advice from any one who has dealt with this and any tips or ideas on getting this little one to sleep. ( 15 months old). Please advise and I will pass it all on to her. You guys are awesome and she doesn't have a resource like this group.
Thanks

[pattissimon]

I don't have much advise, but I feel for her. My daughter who has ToF is also a twin, her brother is heart healthy. She had her repair at 4months and until then we were cautioned to keep her from getting to upset as this would bring on a tet spell. It was sooo hard! I will try and think of some helps and get back to you.
Patti Simon.

[deanna.m.gourley]

My daughter Gracie has HLHS and had a hard time sleeping and still does at times. What really works for us is letting her sleep the majority of night in her swing, she will only sleep in the Fisher Price Papasan swing. It cradles her and rocks side to side. This swing is amazing, we actually took it to the hospital after both of her open heart surgeries since she stayed for several months at a time. I can even remember a time that Gracie was on the verge of being reintubated, and the doctor actually told the nurses to put her in her swing and watch what she does. This swing does have a weight limit of 25lbs, but if the baby is small it might work.

I would advise on buying the swing with the buyer protection plan, because Gracie has used hers so much we have had to replace it three times.

Another thing that could help is some benedryl. We give this to Grace when nothing else works and we are at the end of our rope. Both her pediatrician and cardiologist said it was fine to do on occassion. Gracie weighs 16 lbs and is almost 18 months old and gets a dose of 1ml--you can give it every 4 hours.

As I write this I'm also wondering if the baby has stomach aches and pains that keep her from resting, warm olive oil rubbed on her belly following the digestive track works amazingly well.

I hope this helps....tell your friend good luck.

Deanna, mom to Morgan 3 HH, Gracie 18 mon. HLHS

[Alli and Kyle Hicken]

I have often wondered if my son's sleep issues are related to his personality or to his heart and other organ complications. I think that Deanna's swing is a great idea. We have finally been able to get Grant to sleep for a few hours at a time by using a white noise machine to muffle all other outside noise (he is an INCREDIBLY light sleeper), elevating his crib mattress, putting a warmed rice bag in his crib placed near his tummy, using a healthy dose of reflux medications at bedtime (always a possibility for the poor sleeping), and using Benadryl when I am at my wits end. Grant is now almost 10 months old and has been getting better, but I am still up with him probably 5 or so times a night. We moved a twin bed into our nursery so that I could soothe him and still try to stay sleepy myself. Good luck to your friend! Perhaps she can still join the group or log in as a guest to have some additional resources?

Alli
mom to Grant (HLHS, TGA, TAPVR, etc.)

[Chrissie]

This is a hard one! Kylie is pretty much a spoiled toddler, because the fact we can't let her get upset, pretty funny my sister-in-law asked me if she gets what she wants when she wants it and I never win? Yep that is about it. Kylie is 16months old and just started sleeping almost all night long. She will sleep all night a couple days of week which is wonderful. I have felt a little more comfortable letting her fuss a little before I go comfort her. 5 minutes max fussing, no crying or screaming just a little whining. It is so difucult I really wish somedays we could just let her cry it out I think we all do LOL.

I noticed when we put Kylie in her own room it helped a lot. As Alli said white noise is fantastic, I use a CD player and have found some pretty good lulubys to help. I get up a couple times a night to turn them back on, but helps her sleep pretty good and knocks out all the other noise around. What about a stuffed animal? the heatbeat ones? that helped Kylie too. I am so sorry for your friend. It has to be so hard on her. Does she have someone to help during the day? I would suggest the swing also. I used Kylie's c-pillow to prop her up do the the NG and reflux problems. Oh I am truly sorry for her. Let her know we are all thinking of her and her sleepless nights :0)

I must admit I am a benadryl junkie LOL I use if for my 6 year old and for Kylie when she has had a rough day and I know it is going to be a rough night. GOOD LUCK!!

[Heart Mommy]

Okay,
so we know that babies have a routine that they follow, or that we design for them... But, heart babies seem to be the exception because of all the waking up at the hospital and not being able to cry and such... Gator is the worst sleeper to this day... We have tried the vacuum, the bathroom fan, radio white noise, swings, hot pads, benadryl, elevation, baths before bed, eating earlier.... It is something we still don't have down and my boy is a toddler. We have nights and weeks when nothing works. Sleep is an amazing healing tool. So these are a few of the things that most of the time work for us. We tightly wrapped his arms but not his feet, we also have him elevated using stiff pillows under his mattress. He has a noise maker that is a bathroom fan built into a box... the loudest rated...We also play his fave music while he falls asleep. He strangely needs a brighter light than I expected to sleep a closet light or a lamp. Then on our most terrible nights we use Half a tab of Melatonin. This is a natural sleep aid with no antihistamine like Benadryl, antihistamine can actually wake some kids up as it does for Gator. I bought the chewable version at Walmart. I also got it okay-ed with my Ped before I tried it because as with any meds you should always check to make sure your heart baby won't be adversely affected, if your Ped isn't sure check with you Cardiologist. Benadryl can actually be kinda bad for Gator too, because it slows down his natural rhythm. When Gator had C-diff he slept very little... Make sure that she is chatting with her ped about this issue as it can mean something else is going on. The Doc can give her ideas on how to help HER baby. When we brought Gator home the first time, he was actually very VERY sick still with C-diff, we didn't know that and we slept so little it was hard to SEE that he was changing so much and getting sicker. One of the Ladies in my church had triplets, she knew about the machines and all the tubes and offered to come over and hold Alex for a couple of hours while we slept. I got 4 hours of precious sleep. That women was instrumental in saving Alex's life. After some sleep I was able to see just how sick he was and we got him to the hospital. When we got there he was in shock and we didn't have much time left. I know not every situation is like ours. But, I do know how hard it can be. So my last bit of advise is to let a nurse or someone that you trust let her sleep a little somehow... Oh good luck, This is one of the hardest things for me... Sleep helps me cope with everything else that is wrong in my world.... Let her know that a stranger in Utah is thinking about her, and has been there too.