- Care Package for Friend with Preemie in NICU
- Preemie Specialist Pediatrician?
- Supporting my sister who had a baby at 32 weeks
- Resources for new mom of premature baby?
- Groups or activities for premature child w/developmental delays?
- Weaning preemie from nipple shield
I have a friend in Chicago who just had her first baby at 30 weeks. He'll be in the NICU for a couple of months and I wanted to do something helpful for her but I can't go out to visit. Does anyone have recommendations for a care package or other gift that would be particularly helpful for new parents with a baby who'll be in the NICU for a long period of time? S.
Instead of a ''care package'' how about hiring someone to clean their house, do laundry, etc. Also getting meals for them. there are some companies like 3 Potatoe 4 who will bring wonderful organic meals to their home, on whatever schedule best suits their needs, every day, every other day, whatever. If this is a bigger financial committment than you can take on, you could get together with other friends/family members & pool your funds. These *gifts* will relieve them from some of the burdens of trying to manage the household while spending as much time as possible w/the baby. Deborah
Food...Either food delivery or gift certificates for casual restaurants (better if you can get take-out) will be much appreciated. It is a long haul and the last thing you feel like doing after a day/evening at the NICU is cook. Anon
Food! Most new parents, and especially very stressed new parents will appreciate the thoughtfulness of some sort of healthy food that they don't have to prepare for themselves. Given that your friend is in a different state, this may be a bit of a challenge, but perhaps you can use the power of the internet or the assistance of one of their family members to make it happen. For example, some of those meal prep places offer already-prepared meals that can be picked up and heated up at home, or check out restaurant delivery services such as grubhub.com or takeout taxi. L
I agree that food deliveries are a great idea, but want to suggest something different. When I ended up with a preemie, I had not done ANY shopping for baby gear, let alone any research on what I would even need. How about asking the parents what they still need and offer to research, i.e. where to get a certain model of a crib for the best price, or buy a diaper bag and diapers and a diaper pail, or anything they might not have in the nursery yet. You could pool with other friends again. NICU time is really stressful
a box of soft kleenex, a pedicure, lunch brought to the hospital, a book about preemies, and a box of ''emergen-C'' former nicu mom
Does anyone have a good recommendation for a pediatrician who specializes in care for premature infants?
My sister lives in the UK and had a baby at 32 weeks, 2 days ago. He is 2lb 7oz and doing well apart from his lungs have not developed properly so he is on a ventilator. He was small for the gestation date due to the placenta failing. Can anyone just help me out by giving support or stories about their premature babies ? I feel totally lost being all the way over here and unable to give the love I should to my sister. I can't stop thinking about her and little Mack. helen
The best think is information and support. You can get started from anywhere with: http://www.preemie-l.org This is a good place to start.
The most important aspect of otherwise healthy premature babies is the simple fact that they are so small in their first months of life. I had premature twins born at 33 1/2 weeks weighing 4 pounds each. In the beginning they need to be fed all the time. For us, it was every 2 hours 24/7. We had to do this for a few months. This is extremely hard on the parents. There is no way if this is your sister's case that she'll be able to keep up that schedule. The sleep deprivation that parents feel is very very hard to recover. Hopefully, your sister is willing to supplement with formula so that others can help with the feeding so she can rest. Believe me, if she can't get rest the breastfeeding will be difficult for many reasons. A network of friends and relatives is what she'll need to share the wealth. Otherwise a healthy premature baby will catch up in every respect to their full term equivalents. Best to you and your sister's family. karen
Hi - I just thought I'd share the story of my friend whose daughter was born at 27 weeks, and was 1 lb. 15 oz. Now, almost 2 years later, she's doing GREAT! 32 weeks is considered a pretty safe time at this point, and your little nephew is obviously getting great care. Odds are very good that he will be totally fine, so just try to take it one day at a time because each day is an important milestone for him. Good luck, and sending you hugs. anon
My sweet boy was born by emergency C-section at 34 weeks (I went into the hospital with severe precclampsia at 33 weeks), weighing 4 pounds 7oz. I, of course, was totally traumatized by the whole experience, even though he was basically a healthy boy (a little jaundiced, a bit small, had a nasal feeding tube for 2 weeks until he could nurse convincingly). I remember that it was the little stuff that bothered me the most...he was absolutely swimming in even newborn clothing, and that really freaked me out. Adorable preemie clothes to the rescue (Rockridge Kids has a great selection)! It felt good to go through the significant effort of pumping breastmilk because it was something only I could offer him, and it kept me focused on the future that I wanted for us (to bring him home breastfeeding 100%, which did ultimately happen). And I spent hours and hours holding him skin to skin once he could be out of his bassinet (UV light therapy and ventilators of course get in the way of this, but even just being able to have him hold my finger helped). And now? He's 13 months old, fat as a tick on a hound dog, mischevious and tempermental, and TOTALLY NORMAL. He really never looked back! What's amazing to me is how quickly the preemie thing faded into the past for us. It was completely horrifying to go through, but perhaps has allowed me to transition into the daily grind of motherhood with a bit more humor and a solid appreciation of how this fantastic creature has come to be in my life. So send some tiny outfits and your love, modern medicine is amazing and little Mack will probably be terrorizing your sister's household soon enough. Go visit when he's been home for a month or two, that's when she (and all moms) need help the most!!! stranda
Every parent responds to the crisis of having a very premature baby differently. However, as a mother of twins who were born just over 9 weeks early, the following things were helpful to me. I found that living at the NICU day in and day out to spend time with my boys could feel very isolating. It was helpful to have people come to sit with me during those long days. The NICU is generally a quiet zone, but just having the company was nice. It was also good when people met me to grab a bite to eat or to take a walk during the time each day that the NICU is closed (generally an hour or two in the afternoon). I didn't want to take the time away from my boys to go shopping, so it was also wonderful when people brought or sent preemie clothes. Our boys still swam in them, but at least they didn't just fall off when you held them up! Children's Place in Walnut Creek and Walmart (of all places) have preemie clothes but they're meant for babies around 5 lbs and up. There are a number of internet sites such as preemie.com that carry preemie clothes for babies starting at less than 1 lbs. Somehow being able to dress your little ones in clothes that fit make them seem less tiny and fragile. The nurses at our NICU also encouraged us to get involved early in changing diapers, taking temps, holding the boys during procedures, etc. It was great to have the modeling that even though they were so fragile medically, they weren't actually as physically fragile as they looked. We also kept a digital camera with us and took pictures often--it's amazing how much change you can see from week to week in pictures that you don't see otherwise. There are many ups and downs that occur during the long weeks in the NICU--it was great that my friends kept calling and checking in and were there to hear the good and bad news. There is usually a flood of support in the first couple of weeks, but then people return to their lives while yours is still on hold--I really appreciated the friends that stayed the course with us. My sincerest of good thoughts go out to your friends and their baby girl. -Alesia
My friend's baby was born several weeks prematurely. The hospital wants my friend to take the baby home soon, but my friend is afraid that the baby isn't ready to come home yet (she occasionally stops breathing when she eats); however, the hospital is pushing for the baby to go home. My friend is exhausted, scared, and overwhelmed by what faces her in caring for a preemie. I would like to help her by finding whatever resources are available in the East Bay for preemies and their families -- support groups, advocates, anything that might help her make it through this stressful time. I remember how scary it was having a full-term newborn at home, and I can't imagine the stress of caring for a child whose life really is in a daily balance. Feeling helpless
I am the mother of a 5 month old premie who was born at 33 weeks. It can be a terribly isolating experience. The support group at the hospital was really only helpful for learning the ins and outs of the NICU. And I didn't really find many resources or support groups for after the baby departs the hospital.
My child had those feeding bradys as well - and though I found them terrifying in the hospital, I am now pretty sure all babies do this from time to time as they learn to eat. We premie parents are just a little more freaked out because there are so many things being monitored on our babies that we know every little decleration of their heart and change of their body temperature.
While I was terrified at the time, going home was really the best thing for all of us. Things really did get a lot easier once we were all home together.
The best gift you could give your friend is something called an angelcare mat. It's a baby monitor that also lets you know if the baby stops breathing. Trust me, this monitor will help your friend sleep at night. It's easy to use and has given us peace of mind. We bought ours online and I've seen them at Babies R Us.
I was lucky that this wasn't my first child - so I didn't have all of the first time mom anxieties to go along with being the mother of a premie. If your friend is a first time mom - I highly recommend that she join a first time mom's group - either one of Sherry Reinhardt's groups or one from her hospital or birthing class. It's important that she ask to be grouped with children who are close in age to her baby's corrected age so that she will feel she's going through the same things as the other moms. Developmentally, her child will be more similar to that group than a group with the same birthday.
And finally, if you email me, I'd be happy to give you my phone number to pass along to your friend. I think it helps to know people who've been through the experience. I know that's who I relied on. mogulli
I was horrified to read your email, where you say that 'The hospital wants my friend to take the baby home soon, but my friend is afraid that the baby isn't ready to come home yet (she occasionally stops breathing when she eats)'. Being the mother of a child born 12 weeks premature (at Alta Bates), the hospital emphasized that they would not release the baby until he had completely ceased having As and Bs (the technical term for what you're describing - Apnea and Bradycardia) for a specified period of time - I think that it was 2 or three days. It's something that preemies do grow out of, so that should be some reassurance. I don't know if your friend had her child at Alta Bates or not, but there is a wonderful parents support group that meets both during the day and in the evenings. Try calling the NICU at Alta Bates and asking about the parents support group (510) 204-1626 to find out when they meet. The support group would also have resources for you. I am also very willing to talk to your friend. Please do pass along my contact information if you wish. Deborah
there are ''post partum'' doulas and doulas who love working with premies and babies!! and i am one of those but there are sooo many and the national doula site is chock full of info social workers at hospitals are great resources. la leche good, too... pace e bene oonie
my second son was born at 261/2 weeks in october 01 (now 17 months old) and has different developpemental delays. as we moved from san diego to berkeley only one month ago, I am not very familiar yet with different groups or activities for premature babys here in the bay area; does somebody know any kind of helpful resource? thanks for your help. k
I just wanted to follow up with the mom that is looking for a preemie support group. My baby was born at 30 weeks in September of 2002. I have searched and even tried to start a support group. There is just nothing in the East Bay. If you want to talk or would like to help start a group please email me. Michelle
Hi, my son is not premature but has developmental delays. If you have not already, get in touch with the East Bay Regional Center and they will help you get services. I highly recommend the Parent Infant Program at Children's Hospital...They have a center-based program near the hospital and a ''natural environment'' program at the Berkeley YMCA.
The Family Resource Network will probably be able to help you locate a support group in the area. I'm sorry I don't have any of these phone numbers but I would be happy to help you further if you would like recommendations for speech, OT, PT, if your child needs them. Feel free to contact me!!!! mary
There are some services which are provided for free until your child is 3 which you need to know about. The services are provided by county. You can find out more either through a hospital NICU social worker or possibly from Bananas on Claremont Avenue in Oakland. The best support group I know of is the preemie - L listserve group. Please feel free to contact me. kathy
My son was born almost 6 weeks early. To get him breastfeeding, the hospital gave me a nipple shield to help orient his mouth to my breast. Soon after we came home, he was receiving all feedings from my breast with the shield. But, oh the pain of it! Now, I'm attempting to wean him from the shield. He latches on sometimes with out it, sometimes with it. I'd love to hear from other mothers who used a nipple shield, hoping for some advice on weaning, proper latch for a preemie, and encouragement so I don't give up. We are making progress, but it's slow. Thanks!
I, too, used a shield to help nurse my baby. She was not a preemie, we just had trouble latching on. I hired a lactation consultant and she gave me a shield. It worked wonders for us.
However, I became quite reliant on the shield and found the transition, to nurse without it, daunting. Every time I tried to nurse without it she became frustrated & cried and I would give up and put it back on. I thought I would end up using that thing for year!
I finally called my lactation consultant and asked for help. She suggested that I put the shield on at the beginning and then, once the nursing was going well, break the latch, pull it off, and start nursing again. This worked fairly well.
What really was the clincher was to try this when my baby was really calm and sleepy (i.e. early in the morning). She had much more patience with trying to nurse at that time. Eventually she preferred the real thing because the milk came out so much faster.
Her latch was still not the best & even hurt me at first. I cannot stress enough the importance of nursing at the first sign your baby is hungry. If you wait till he/she is crying the process is much more challenging & painful. I just kept on trying and she improved her latch after a week or so. Now it doesn't hurt at all and nursing is a joy!
I know you can do it! Just pick your moments and give it a try! Julie
I, too, began breastfeeding with a nipple shield. My son was four weeks early and would not latch onto the real thing, no matter how hard I tried. I read all the horror stories against using nipple shields only after the lactation consultants at the hospital started me on the shield. (Most of the stories, including the ones in the Sears' book, warned against the wrong kind of latching and baby's future inability to learn to breastfeed without it.) But without the shield I'm convinced I never would have been able to breastfeed. And I wound up nursing until my son was 13 months old, when I weaned him to cow's milk. So we did pretty well, all in all.
There was no one thing I did to wean my baby off the shield. From the first week, however, I always offered him my real nipple first. I squeezed my breast to make what the lactation consultants called a ''sandwich'' (love those technical terms) and dribbled a little milk out to entice him. It wasn't a really happy thing. He would cry like crazy, and I was a nervous wreck. I was sure he thought I was teasing him. But suddenly, at about 6 weeks old, my baby latched on once. Then he latched on again-- and again. Several of the lactation consultants I met with told me that many premies won't latch successfully until they catch up to their ''true'' birth dates. I believe this is true. I also think that persistence and patience pay off. Once my son was able to latch on, I stopped using the shied cold turkey. I didn't see any sense in doing it gradually. Unfortunately, I then dealt with a month of excruciating latch-on pain and scabbing because my son had a 6-month-old's suck. Yeoww! (I highly recommend Neosporin for such scabbing.)
I'm now expecting my second child, and I'm just hoping this one goes full term and that we don't have the nursing troubles I had with my first. We'll see. If you have any specific questions, feel free to e-mail me. Gwynne
What I didn't learn about nursing a premie is that until they are 8 pounds, nursing is really difficult (this is what the lactation consultant told me when we were getting close to that point.) Their mouths are very small and it can be painful. I found it helpful to alternate nursing and a bottle (given by my husband) until my child refused the bottle at around 3 months. On the positive side, once the baby gets big enough nursing goes fine, and it's a great way to comfort them, and deal with some of the problems premies confront (mine couldn't digest solids until 6 months, and didn't eat much solid food until about a year). I used Bonnie Bruce as a lactation consultant and she was very helpful for getting through the initial rough period. I would be very cautious about listening to advice from people with full-term babies because at the beginning premies have unique needs and ways of doing things. anon
My daughter was born 5 weeks early and nursed using the nipple shield for 10 weeks before transitioning to nursing directly on the breast. We worked with two lactation consultants at Kaiser Oakland, first Paulette Avery for about 9 weeks and then Joann Jason for one appointment. We liked both of them. However, Paulette tried for several sessions to get my daughter to latch on properly without the shield, and while it occasionally worked in the office we had lots of trouble replicating it at home. We knew this was a common problem but we felt like we were making no progress and it was veryhard emotionally. We finally made an appointment with Joann to get a new perspective, and my daughter immediately latched on and never went back to the shield after that. At 16 months she is still happily nursing. One thing that Joann said that seemed to be true for us is that around 5 weeks after the due date, the baby they often go through a period of increased flexibility around eating -- ie. they might accept a bottle where they wouldn't before, or accept the breast with no nipple shield, etc. My basic advice is this: Be patient with yourself and the baby, this may take several weeks. I know this is difficult. Try to get help from experienced nursing moms (La Leche League could be a good resource) or lactation consultant(s) (we would highly recommend Joann Jason at Kaiser Oakland), and if you feel like you are not making progress with one person try another person. It may be worth making a special effort around 5 weeks after the baby's due date -- so when your baby is 11 weeks old since he was 6 weeks early. Best wishes to you and your son! You can contact me directly if you want to talk more about this experience. losa