Nights are starting to stress me out..

abby · #1 02-08-2004, 07:09 PM

ok ladies, how do you do it without nursing help? When I have help (twice a wk for nights) Jared sleeps in his room in his crib. The other times, he is in our room in a bassinet. However, we have had those few episodes of him desatting (figuring out we think its reflux, whole other issue!) so Ive become a nervous wreck to not have him in bed with me. So, he has been sleeping next to me for the most part.
questions..how often at night do you suction your babies? (on vents?)- In the nicu, Jared went from 12p-7a but I seem to be having to do some 'quick passes" around 3a due to him coughing (again, reflux?). Also, he is such a squirmer that the high pressure goes off any time he moves!! Why is this? Will I ever be able to have a piece of mind?
Reflux...any of you dealing with this? Jared has a gtube and is on zantac and reglin originally for percautions but now I think its an issue. He screams and moves his head a lot during feeds and is starting to spit up more and more. UGHHHHHHHHHHHH--I also fear he will never eat by mouth! (he is 6 months, 3 mos adjusted). I know he wont take by bottle and Ive gotten used to that but I do fear he wont take solids either.
Any suggestions appreciated
Thanks !
Abby

Shari · #2 02-08-2004, 09:16 PM

Abby-
For the reflux problem, I just read a study that showed that prone position (on the belly) was just as effective (sometimes more) for reflux control than the traditional elevated-head position. I have noticed that this does help my Jacob. We are taught not to put babies on their tummies b/o the risk of SIDS, but if they are on the vent, that wouldn't apply.

As for the high-pressure alarm, what is it set on?

-Shari

arielsmom · #3 02-08-2004, 11:51 PM

Abby,
I would ask your GI doc for some other options instead of Zantac. I don't think many people find great results with Zantac for bad reflux. We didn't get Ariel's under control until we used a combo of prilosec and pepcid. Now she does great.
Personally, I lose it without nursing help at night. I usually have it with only the odd night without. I can't give you much advise there. I would agree with Shari that you should check your high pressure alarm as it can be adjusted.
The eating thing you will probably need to see a feeding specialist for at some point. It's a process!
Karen

Laurie · #4 02-09-2004, 08:43 AM

We do lots of things to control Evan's reflux (which he did not have until he got his G-tube at age 17 months). He is on Prevacid and Reglan, we have found he won't tolerate continuous feeds of more than 45 ccs per hour over night, we try to have his feeding pump off at least one hour before he wakes up, we keep the head of his bed elevated, we keep him sitting upright after feeding during the day. Also, he will eat some solids and never throws those up - I personally think the all-liquid diet has something to do with it. Some parents on this page have gotten good results by putting pureed food through the G tube instead of one of the formulas. We have not tried this - the above methods do keep Evan's reflux in check - but it might be worth exploring.

The eating thing takes infinite patience. Keep offering, keep it fun, and work with an occupational therapist, speech therapist, or feeding specialist. It might be worth having a video swallow study done if you have not already, to see if he is aspirating when he eats (which would make him reluctant to eat). We found that thickening Evan's formula really helped him eat better, because he does aspirate thin liquids. So, we give him thickened juice and thickened pediasure in his sippy cup and bottle now. Also, we have found that Evan gets thrush in his esophagus after being on antibiotics, and it shows up as suddenly refusing to eat. Try treating for thrush and see if the interest in the bottle increases. The eating thing can be very frusterating -- best of luck.

We have a night nurse - we have tried sleeping in Evan's room with him a couple of times, but we are so on edge the whole time, afraid we won't wake up if something is wrong, that we don't sleep well. Now, if our night nurse calls off, we divide the night into two shifts, one of us awake keeping an eye on Evan, and one of us gettting 4-5 hours of good quality sleep. It is not ideal, but it works for us. Our doctor also suggested that we could do something like one person go to bed at 8PM and wake at 4AM, the other go to bed at 12AM and wake at 8AM. Then, there are only four hours when both people are sleeping and the baby is on monitors only. But the bottom line is - I would see if you can get a night nurse. All the best...

Laurie

abby · #5 02-09-2004, 07:49 PM

Tx guys. My pulm suggested giving him a continuous feed for his nighttime one to see if this helps. If not, they will try different meds (im pushing for this!)
Tx for the support also about getting him to eventually eat. Another stress!!
Today's apt showed a bit of adelctosis (sp?), I just feel we never get ahead you know? They ended up increasing his peep which im happy about bc I felt he was really working too hard to begin with. We will see.
Again, tx
oh , ps, I cant manage tummy time with the trach!! How do you manage? Im trying to get a flexi trach with a longer tube. As is, JAred has no neck!!

Michael's mom · #6 02-10-2004, 07:04 AM

Welcome to the Funny Farm. It drives you crazy doesn't it?? Here's one suggestion. Since we hav been giving Michael a neb of pulmacort once daily, his secretions have been a lot less and so we don't suction him at night. Wonder if you did that you wouldn't have to suction. As for the tossing and turning, thank God your child CAN toss and turn. Some can't. I have actually thought about making some sort of velcro belt to go across the bed and under his tubing so he couldn't toss, but changed my mind. Take care, Susan

Laurie · #7 02-10-2004, 01:10 PM

The best advice I have for tummy time is just do it - Evan liked being on his tummy and looking around in the NICU, vent tubing, trach and all, although I was kind of paranoid about it. But, we did roll up a towel and tucked it under his chest so his arms could drape over that and his face and neck and trach were not pressed up against the bed or floor or whatever he was lying on. Once he got stronger and more able to hold up his head and support his chest with his arms, he no longer needed the roll.

Whitney · #8 02-10-2004, 11:35 PM

Abby,

My son Alex did not like being on his tummy or sitting up. He would NOT tolerate his tummy time at all and he was ok with sitting up for maybe 2 minutes. He would get upset and we would end up suctioning him. Then, the funniest thing happened. He just suddenly started tolerating it. I don't think he LOVES it, but he does not get upset anymore. He can sit on my lap now for over 10 minutes and he lays on his tummy for about 5 minutes before he gets a little unhappy. I tried holding him over my leg, rolling up a towel beneath his chest, boppy, pillows, etc to no avail. Alex loved being on his tummy before the trach (and he could sit up without any problems). There is hope it will improve. All the suggestions the PT/OT's had did not make any difference. Alex just had to come around when he was ready.

As for feeding issues, I have twins (both with g-tubes) and oral aversions. I have been working with Aidan for over 6 months and have made very little progress. I just know it will work out sometime!!

Keep your chin up and remember, we are here to help and we understand your frustrations!!

Whitney