Parenting a Sick Baby
Archived Q&A and Reviews
June 2009
My 2-month old has had ongoing digestive problems for several weeks that may result from allergies and/or a virus. After spending several days in the hospital we're now home and learning how to deal with a feeding tube (NG tube) and hoping transition to oral feeding transition eventually. Luckily the baby is doing ok - doctors say it's going to take time - but I'm a mess. Each feeding is torture, waiting to see if baby can keep the formula down (about half the time), I'm in tears at doctor appointments, I can't sleep at night even when the baby is sleeping... you get the idea. Therapy would help, but with older kids and a medically-needy baby right now, there's no time. Any suggestions for staying patient and sane? No medical diagnoses, please, just ideas for coping right now. Stressed Mom
I'm so sorry. We went thru a similar nightmare w/my now four yr. old son, though he never had to have an NG tube. As he was born he started having bloody/mucousy stools in rx to my breastmilk and horrible eczema. Then he stopped wanting to breastfeed around 4 mos, and had to be distracted into eating. Then at 6 mos we tried solids, but solid food in his mouth completely freaked him out. It was like that part of his brain that knows how to physically process food in his mouth was way underdeveloped. He was also allergic to rice and would throw up anything w/rice in it exactly 2 hrs. after eating. Finally around 8 mos. and after some allergy testing, Kaiser referred us to a feeding specialist, Marjorie Meyer Palmer in Fremont, who was an angel. Her website is www.successfulfeeding.com. Not only was she calm and reassuring, but she really helped him and us make some progress. She's an internationally known expert and has really worked w/the sickest of sick children. We also did some occupational therapy at Childrens which was also extremely helpful. He didn't start eating solids normally until about 18 mos., and is now a completely normal, healthy little boy w/a few minor food allergies. It was an agonizing 18 mos. for my husband and I. He handled it better than I, and seemed to know that our baby would eventually get better. The level of anxiety you have when your baby is sick and you don't know how to help him is overwhelming. After a few months I had my first anxiety attack which was really debilitating. I dreaded every meal, and would give almost anything if someone else would try to feed him. I have to say, the one good thing that came out of it was that I eventually learned to have faith and know that I could handle whatever came along. Easy to say now. We now have a new baby and I'm praying that we don't have to go thru that again. I was seeing a therapist thru all of this which helped a lot. She tried to get me to talk to my dr. about some meds for anxiety/depression which I was very resistant to, but wish I had in hindsight. Just something to help me feel less anxious. I guess I felt like a loser for not being able to ''handle it.'' Exercise helped clear my head. If you would like to talk further, please email me. I hope you're getting some support from your family and can get some peace, and please do what you can to take care of yourself. cv
Dear Stressed, I was in the same spot with a sick newborn and what really helped me was a night nurse. She was great, she had alot of experience with premature twins so was able easily give my son his medicine and I got 8 hours to rest. I really felt that a lot of my problems came from the stress and the sleep deprivation for the weeks that my baby was in the hospital. When he got home, I couldn't relax enough to sleep even when I had the opportunity. Every little thing sent me into a panic. Every little setback made me cry and cry. It was really expensive-$240 a night-but worth every penny. It was a crazy amount of money really but I wouldnt do it any differently if I had to do it again. We had her for 5 days a week for two weeks and then went down to every other day for 3 more. Then we went down to one night a week for few more weeks. Knowing that I would get a break at some point really made it easier to cope. Unfortunatly she has moved but there are alot of good nurses out there. Good luck and take care of yourself. once stressed - all better now
It must be stressful and exhausting having a tiny baby with digestive difficulties. We just want to feed our babies! Just wondering if you and your baby are getting some help with figuring out the best feeding schedules/rates, etc., to reduce vomiting (and, presumably, your stress about it). Also, you don't mention where you are in the ''transition to oral'' process, but hopefully, there is someone helping with that, too. IF baby is tolerating the tube feeding well (not uncomfortable during it), try giving the (emptied) breast, your finger, or a pacifier during the feeding, and holding baby just like you were breast- or bottle-feeding, so baby continues to associate sucking and being held lovingly with filling up. This can help calm baby - and you. However, if baby is very uncomfortable during the feedings, and this doesn't help calm him/her, do some ''suck and cuddle'' at a happier time You want the association between sucking and feeling good to continue). If reflux might be playing a role, I assume you've been advised to keep baby upright and pretty straight (not folded over at the tummy) for a while after feedings, and to give small, more frequent feedings. You might contact the Regional Center of the East Bay, or your insurance, to see if you would qualify for a feeding therapist who would come to your home and help with all that, especially if it's been more than a few weeks. You shouldn't have to do this alone! Good luck! an O.T./feeding specialist
I feel for you -- to have a medically needy infant and another child (children?) No wonder you are stressed. Have you asked the pediatrician and/or specialist if there is any kind of respite care you are eligible? If you live in Berkeley, call the public health department (my child was a premie, and they sent a nurse over a couple of times, although we also had friends to help). Do you belong to a church or a synagogue -- often members help each other out during illness, I know my synagogue has a set-up for this. If someone, friend, relative, older person (I'm thinking someone retired who has daytime time available), paid helper could come and help spell you, either with the baby, or playing with/caring for your other child/ren, I think you might have an easier time balancing so much. Unfortunately your situation, where parents of sick children are expected to provide skilled nursing care, is indicative of the failures of our health care system. take care
You might want to check out some preemie parenting sites on the web. Even if your baby was not born prematurely, feeding issues are common in preemies, and I found that the supportive articles and posts about dealing with a sick baby to be really helpful when i was in your situation. Just to know that others are going through similar issues, and getting perspective on why others may not understand your stress and concern, and being able to have this ''therapy'' for free at any hour was very soothing. Good luck & good health to your little one!
I took in a foster child (who I've now adopted) who was 16 months old, very thin, with multiple issues, fragile, and had just been placed on a feeding tube. I had no other children, no experience and am a single mother. I really understand the stress you are speaking of and I am sorry to hear you are going through such a tough time. Here is what I can remember helped me to get through it -- first of all, on a practical level, go super slow on the tube feedings, take time to let it get in. The GI specialists were able to show me the rudiments of the tube, but it really is an art form to administering to your child, and eventually you will start to gauge how much your baby can take and get better at it. But it will probably never be perfect. My son throw up at least a 1/3 of the time and still ended up gaining weight. Another thing that helped is that you will just get better at the tube thing. You will get adept at it and it will feel like second nature after a while. I looked at it like I was a nurse -- the more technically you handle it, the more in control you will feel. The main thing is dealing with a sick kid -- it is just hard to see and I was always scared at first that I would hurt him or he would get weaker and sicker...My son is now almost 2 1/2, off the tube, eating regularly, running around and perfectly normal. But, I am still protective and the memories of his sick times are still fresh in my mind. You need to give yourself a lot of credit for having the strength to push through and do what needs to get done. Best of luck and good wishes! former tube feeder
Hi there! Little breaks to exercise, do yoga, cry, see a funny movie? Lean on all the support you have. You might enjoy the book, ''Full Catastrophe Living'' by Jon Kabat-Zinn. A little St. John's Wort or have MD prescribe low-dose SSRI to minimize stress? And have one night a week where you are totally off night duty. Sorry for your stress
Hang on! Your baby's tummy will grow and capacity for absorbing food will increase. Coping: as possible, like any new parent, take your baby for walks in the warm summer sun. Don't focus on feeding as the filter or lens for your entire experience with your new baby. Try to notice the baby's hands curling around yours, the wrinkly flesh filling out with baby fat, baby's response to your voice. Can the older kids do more chores to help you at home? When things go bad, I set the bar lower so I can pass the hurdle. Let your house get a little dirty, can you get take-out food or friends or family to provide cooked meals? And it's okay to cry. Breathe. We're pulling for you. Another mom
Help! As much help as possible. I was there too with a 4 month old with an ng tube and despite working in the healthcare field was terrified! It gets better, but seems like an isolated living hell for a while. If you'd like to talk, please shoot me an e-mail. Know you likely have NO time, so can e-mail, or whatever helps. I also found the support group on the website (www.reflux.org) very helpful, though will not assume this is your child's issue. Hang in there - my heart goes out to you. Jennifer