Advice for Parents of Preemies

Resources and advice for parents with premies.

Advice for Premature Babies

Clothing Sources

Carters

Not everything is super expensive but some of it is but it's great. And they deliver quickly. If you sort by price you can find some good deals.

www.preemie.com

http://www.preemie.com/Earlybirds_bymfg_25-1-1.html

http://www.preemie.com/Chuckleberries_bymfg_21-1-1.html

http://www.comfykid.com/Zutano-newborn-clothing.htm

www.gap.com

www.Oldnavy.com

http://www.gap.com/browse/category.do?cid=8807

Babies R Us has a section of just preemie clothes

Books

The Premature Baby Book by Dr. Sears

I really liked The Premature Baby Book by Dr. Sears. It was informative but non alarmist.

· Preemies: The Essential Guide for Parents of Premature Babies Dana Wechsler Linden, Emma Trenti Paroli, Mia Wechsler Doron M.D.

It's very good, and not alarmist despite the hundreds of things to be alarmed about. The NICU nurses at Presbytarian have been great, and hopefully your cousin is at a good hospital in Chicago.

 

ADVICE FOR MOM AND DAD

 

Stay away from the internet except for professional health or hostpital sites. Sometimes the internet is good, but it can also be alarming.

Be very very nice to nurses. They're amazing, and it'll make her life a lot better

Keep asking questions, being as involved as possible, but remember that NICU doctors are notoriously detailed about current minutiae and closed lipped about outcomes and futures because they just can't know.

Once the baby is off the respirator, kangaroo care is wonderful. I am convinced our babies improved due to Kangaroo Care. In the meantime, there's always reading and singing to the baby.

The nurses and doctors in the NICU are the most dedicated people you will ever meet. Not only is the baby's care extraordinary (and miraculous), but they keep a close eye on the parents and offer every conceivable form of support, guidance, info, etc

Be prepared to experience setbacks. The baby will have one step forward, 2 steps back, then a few steps forward, and one step back. It's a roller coaster.

To get milk flowing, Marshmallow Root and Nursing Tea.

We called the NICU regularly to ask nurses how they were doing, how much they ate, did they have any setbacks, etc. Some nurses are less than friendly, but it's your baby and your right to ask.

Try to be positive. It's hard, but as the weeks progress, the baby will get bigger and you should document the progress.

Take pictures of the baby and print them. When we went home, we had pics of the babies around the house so we always felt they were nearby.

Don't believe all the tests. Our babies had heart murmurs, tested positive for cystic fibrosis, tested positive for hip dysphasia, eye problems, etc...all ended up to be errors in equipment and the babies were too small to accurately assess. Be patient, and always ask about the accuracy of every test. Some tests are serious, others are not.

Another thing that I will suggest is that they should do a blood test to see if they are compatible blood donors. Baby may need one or more blood transfusions. The mother probably will not be allowed to do this so the father should test or any other close relatives.

Ask the NICU about support groups. It's OK to cry, be depressed, and have ups and downs. There should be a social worker or psychologist at the hospital who can help. They should ask about this.

Consider an Amby Baby Hammock. It is very comfortable and snuggly, and cradles the baby.

I would suggest appointing one person as the "communicator". A friend, family member who all other well-meaning friends and family can call for updates, etc. The last thing you need is pressure to return dozens of phone calls each day.

My husband took advantage of the family emergency medical leave act so he could be at the hospital every day with me. That was a blessing.

In very short time, they will get to know the other parents in the NICU and it will be a comfort to know that others are in the same position.

It's also important that they get some rest and take care of themselves.

FYI -- the baby may not stay in hospital until July (his due date I presume). We thought both of mine might be in for that long, but both came home at 34/35 weeks gestational age.

It's not unusual for the mothers to experience a lot of guilt and possibly post-traumatic stress after a premature birth. This can linger for awhile.

Decision making on every day things seems trivial when your son is fighting for his life.

Don't let the hospital scare you each time a test arrives.

Nurses will tell the parents that they should spent more time at home, because when the baby comes home they be even more tired. Don't listen to them if you feel you have to be with your baby.

Sometimes they'll let you hang a little mobile and stuff (more for the parents than the kids I think!)

The time goes fast and the progress helps.

"One day at a time" is the best advice i can give

 

ADVICE FOR SUPPORT FOLKS

 

On my part I really appreciated those who were sensitive to our situation and who acted like they would if my children had been delivered full term.

We had friends and family cook meals for us and brought them to the hospital. Otherwise, the next few months will be spent eating horrible hospital or fast food nearby. This was an extraordinary help.

 

ORIGINAL POST AND FOLLOW UPS

 

ORIGINAL POST

We just heard today that my husband's cousin just gave birth to a premature baby who is 1 lb. 13 oz baby boy, 13 inches (born after 26 weeks).

He lived through his first night which is a good sign, is on the lowest setting on the respirator, but the doctors say that he'll probably be in the hospital until July!

Does anyone who has experience with premature babies have advicefor them? They live in Chicago. I don't even really know what to ask about-

Where to get preemie clothing?

How to manage life revolving around hospital visits?

Support groups and access to practical information?

I DO know that there are probably those of you out there who could

help.

Thanks in advance,

XXXX (2nd-cousin-in-law to a little boy described as "a tiny baby

who is all legs and arms with a head of black hair")

 

ANSWERS

You won't need to worry about clothes for a long time, but a blanket to cover the incubator could be a good gift. Also beanie babies are apparently good for support inside the incubator. I think a blanket to take to the hospital for mom would also be nice. Presbytarian offers parents a $6 coupon for the hospital snack bar, but parking and food are regular issues for visiting parents.

That's all I know after a week of experiencing this with [my friend], but I'm sure you'll get lots of responses.

I am the mother of a formerly 1 pound 11 oz baby girl who spent three months in the hospital. She is now 8 pounds, home and doing extremely well. It was all quite an ordeal but you do get through it, and many, many, many such preemies wind up completely fine.

As far as advice is concerned, I really liked The Premature Baby Book by Dr. Sears. It was informative but non alarmist. Support groups, I think, are in pretty short supply, because NICU experiences vary so greatly. I tended to reach out to other mothers that I saw on a daily basis at the NICU, ask them how their kids were doing, that sort of thing. I'd be happy to talk to your cousin if she wanted, though I know I often didn't feel comfortable with such offers. But if she does, I'm definitely available. NICU's are amazing places, you desperately want to get out of there, but they also become like a real family all the same. Be very very nice to nurses. They're amazing, and it'll make her life a lot better if she's on good terms with them. Three months for a 26 weeker sounds reasonable. They generally estimate around the due date.

There'll be a huge amount of ups and downs, the greatest roller coaster of my life. Keep asking questions, being as involved as possible, but remember that NICU doctors are notoriously detailed about current minutiae and closed lipped about outcomes and futures because they just can't know. Once the baby is off the respirator, kangaroo care is wonderful. In the meantime, there's always reading and singing to the baby. Clothes were not a concern for us for a long time because NICUs generally want the babies in only a diaper and hat until they're more stable. Good luck.

Mother of XX, 29 weeker

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First & foremost I wish your cousin all the best!!!! I had my little girl at 32 weeks she was 3 lb. 14 oz and 16 inches. It's so great to hear that the baby is already on the lowest setting on the respirator.

A few things that I can suggest is to be prepared for things to be up and down, I saw babies be on and off respirators in the NICU, I even saw 1 baby on a respirator and then 1 1/2 days later he went home. Of course the most important thing is for the baby to be eating. I'm not sure if the mom will be producing any milk at 26 weeks, but if at all possible if she can start pumping to get breast milk for the baby, I would highly suggest it. If she needs any help there are some teas out there to help with getting the milk flowing, Marshmallow Root worked really well for me, as well as the Nursing Tea from Yogi, I think.

As for support groups, I would ask the nurses in the NICU, they should have some suggestions.

Going to the hospital was the hardest, actually leaving the hospital without the baby is the hardest, I would say first and foremost prepare them for that!! It didn't hit me until I was walking out of the hospital & it was really heartbreaking! I was lucky enough to have my daughter in the hospital for only 10 days, but I did see alot of other parents who had been there a much longer time. They shared the duties, some nights dad would be there other nights mom would be. There were some days where they just called to check in on the baby. For me I was there every morning at 9:00 fed & changed her, hung out in the cafeteria, came back at 12:00pm fed & changed her, left, came back at 3:00pm fed & changed her, then met my husband after he got off work at 6:00pm then we were home for the night and would call to check sometime in the evening.

You can get preemie clothes at Babies'R'us. It's usually a VERY small rack, there are a few websites that have only preemie clothes.

YYYY

P.S. Our little girl has tripled her weight and she's 5 months old now & you can't even tell that she was a preemie.

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Dr. Sears's "The Premature Baby Book" is apparently an excellent resource and has a lot of great ideas.

Your cousin might want to look into getting an Amby Baby hammock for their baby. We got one for our daughter as she hated lying flat on her back, and she's loved sleeping in it since. I remembered that they were said to be good for preemies. The Amby is used in a NICU in Minnesota with good results. It is very comfortable and snuggly, and cradles the baby (the Amby website claims it is 'womblike' but I'm not sure about that one!). It also keeps the infant in a more upright position which might be nice for preemies. I found it online by googling "amby baby." It is around $300, but I thought it was well worth the price for my full-term infant and I will use it again with my next baby.

Again, good luck to your cousins and their baby!

Most hospitals have fantastic support systems in place for parents of preemies. I'm certain a social worker will have visited them by now to offer support, guidance and information on NICU parents meetings, etc. We had a great social worker here at NYU (our daughter was born at 30 weeks)

Arranging life around the NICU has so much to do with how supportive the parents' employers are. My husband took advantage of the family emergency medical leave act so he could be at the hospital every day with me. that was a blessing. I would suggest appointing one person as the "communicator". a friend, family member who all other well-meaning friends and family can call for updates, etc. The last thing you need is pressure to return dozens of phone calls each day.

Preemie clothing was a little tough to come by, but I now know it is easier to find online. (I still have some preemie clothes that i would be happy to send out to chicago.) I also have some helpful books on what to do when your child is premature.

They are definitely in for the longhaul. The first few days in the NICU are terrifying and dizzying. Then they will get used to it and they will handle it. Some days they will get great news, some days it will be awful -- changes every single day. It literally takes a while for the shock to wear off, then believe it or not, it becomes the new normal to spend all day every day at the hospital. We urged family/friends to please stay away for awhile, not to visit the NICU, etc. it was just too overwhelming. In very short time, they will get to know the other parents in the NICU and it will be a comfort to know that others are in the same position. We knew many where the parents would take shifts, mom there all day and then dad would come after work and stay as long as he could. How they manage it depends on whether there are other children at home, etc.

The nurses and doctors in the NICU are the most dedicated people you will ever meet. Not only is the baby's care extraordinary (and miraculous), but they keep a close eye on the parents and offer every conceivable form of support, guidance, info, etc. I know this sounds lame and oversimplified, but "one day at a time" is the best advice i can give.

Any questions at all, please let me know. Anything i can do, please let me know.

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My daughter was a 27 weeker and weighed in at 2lbs 7 oz. She stayed in the NICU for 99 days. She's now a thriving 27 month old.

It's going to be a tough ride for your cousin but everything will work out.

Here's a great blog kept by a father of a 24 weeker baby boy.

http://snowdeal.org/section/ex_machina/archives/2004_07_01_index.html

Another good resource is the preemie book.

My NICU had a copy so they should ask the nurses to see if their NICU has one too.

For clothes check out gap.com or oldnavy.com online. Babiesrus has a section of just preemie clothes also.

I agree that they should try kangaroo care. I kangaroo'd my daughter the 4th day she was born and did it every chance that I had. Once the baby stabilizes, they should also ask to speak to the hospital's Physical/Occupational Therapist. The PT/OT can give them advice on how to hold the baby and how to give baby massages. Skin to skin contact goes a long way for the little ones.

Another thing that I will suggest is that they should do a blood test to see if they are compatible blood donors. Baby may need one or more blood transfusions. The mother probably will not be allowed to do this so the father should test or any other close relatives.

It's also important that they get some rest and take care of themselves.

I hope this helps.

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I've had two preemies - my son was born at 30 weeks on XXXXX -- he just turned two and he is perfect!

My daughter was born at 29 weeks on XXXXX. Neither were as small as your cousin's baby... both were just over three pounds.

The NICU is a scary place -- one NICU nurse we were close to likened it to a war zone. It's the truth. It's important for your cousin to spend as much time as he/she can at the hospital, but that they also take breaks. Go out to dinner at least, just to get some time away.

I read that another parent posted about kangaroo care -- excellent advice as it allows for both mommy and baby to connect. It won't be possible to do until the baby is extubated unfortunately. It was several days before I held either of my babies and it was so very painful not to be able to do that.

It's good news that the respirator was on a low setting. Was the mommy on bed rest at all? Did she get any steriod injections to build the baby's lungs??

FYI -- the baby may not stay in hospital until July (his due date I presume). We thought both of mine might be in for that long, but both came home at 34/35 weeks gestational age.

A good clothing web site is www.preemie.com. You can also search "early birds" and "chuckleberries" -- we like their preemie clothing. Zutano does an itzy bitzy line that is great too.

That said, we have some preemie clothes that we'd love to pass along... if you want to send them to your cousin we can arrange to get them to you somehow.

Let me know if you have questions that other parents haven't answered yet..

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I am the mother of triplets who were born at 28 weeks, one of who was 1lb.

13 oz at birth. They spent 2 - 2 1/2 months in the NICU and it was the most terrifying experience of my life. Our trio are now 4 years old and thriving.

I'd be happy to listen to the the parents and offer whatever advice they seek. For starters the hospital may have a social worker or parents support group they can join. As you can imagine it's not unusual for the mothers to experience a lot of guilt and possibly post-traumatic stress after a premature birth. This can linger for awhile. The parents are going to feel helpless as everyone around them takes care of their child who they probably can't even hold. Plus a number of important tests are done on the infant within the first few weeks. The lungs, bowels and brain are most effected by a premature birth as they aren't fully developed yet.

As far as hospital shifts I had to travel 40 minutes every day by car to visit my children. As I wasn't allowed to drive for a number of weeks after my c-section I had to have family come live with me for awhile. At the hospital I would breast pump, visit the three, check in with doctors and nurses on their progress and get to know the other moms. I basically lived at the hospital during the day. My husband would stop by at night and see the children. The hospital had our phone numbers and we were encouraged to call at any hour of the day or night for an update. The hospital didn't have accommodations for parents to spend the night so we went home every evening.

Preemie clothes won't be needed for awhile but when they are Carters and Baby Gap has a line of preemie wear.

These parents are going to need a lot of understanding and support. It's very difficult to see your child who doesn't have any fat on his body, poked with needles and hooked up to tubes and wires. It's hard for some parents to get close to their infants or bond with them immediately. Decision making on every day things seems trivial when your son is fighting for his life.

On my part I really appreciated those who were sensitive to our situation and who acted like they would if my children had been delivered full term.

For instance my husband's office sent a huge bouquet of flowers to congratulate us. The cards and little gifts - preemie clothes, little items for the children's incubators, etc. that we received from people. The family and close friends who came by the NICU to see the kids. For many people they didn't know how to act and basically did nothing which I completely understood. However, I'll always remember the thoughtfulness of those who did act.

If the grandparents need to talk to someone I know my parents, who live in Ohio, would be up for talking to them about what they went through as well.

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Firstly, congratulations. I am sorry to hear your cousin's baby arrived so early, but this is also a time when a beautiful baby arrived into the world. This is definitely a difficult experience to endure, as my wife and I learned firsthand. Our twin girls, born at 29 weeks, were only 1 lb 9 oz and 1 lb 14 oz and both were only 13 inches long. They were in the NICU for a good 2 months. I won't lie. Every day at the NICU was difficult, but it does improve, and before you know it, the baby will be home. 26 weeks is difficult, but we met several parents in the NICU who had babies this early and were discharged with healthy babies. A few had more difficult experiences (brain bleeds, etc), but this was not always severe and each baby is different. Don't let the hospital scare you each time a test arrives.

A few things that helped us during this period:

1. We had friends and family cook meals for us and brought them to the hospital. Otherwise, the next few months will be spent eating horrible hospital or fast food nearby. This was an extraordinary help.

2. Nurses will tell the parents that they should spent more time at home, because when the baby comes home they be even more tired. Don't listen to them if you feel you have to be with your baby. My wife spent nearly 12 hour days with our girls while I worked, and she was able to monitor every procedure, every setback, every experience with the girls. This is critical when the consistency of care is not always great. There were times when my wife needed more rest, but I think it helped our girls to have their mom with them also.

3. We did Kangaroo Care with our girls and think it helped a lot (both the babies and ourselves). Our theory is that the babies came home 2 weeks early because we practiced this with them. The baby needs to be able to breathe on its own for a little while, so at 26 weeks this might not be possible, but once he gets to about 30 or 31 weeks, they may want to start. Some nurses don't like to practice this, so I would suggest they try and get nurses that respect this desire (if they choose to do it). It is a wonderful experience to touch your baby, skin to skin, during a time when the baby spends 90% of it's time isolated in a glass box. I am convinced our babies improved due to Kangaroo Care.

4. Be prepared to experience setbacks. The baby will have one step forward, 2 steps back, then a few steps forward, and one step back. It's a roller coaster.

5. Stay away from the internet except for professional health or hostpital sites. Sometimes the internet is good, but it can also be alarming.

6. It's OK to cry, be depressed, and have ups and downs. There should be a social worker or psychologist at the hospital who can help. They should ask about this.

7. Try to be positive. It's hard, but as the weeks progress, the baby will get bigger and you should document the progress. Weeks of development are a lot for a baby this age.

8. Don't believe all the tests. Our babies had heart murmurs, tested positive for cystic fibrosis, tested positive for hip dysphasia, eye problems, etc...all ended up to be errors in equipment and the babies were too small to accurately assess. Be patient, and always ask about the accuracy of every test. Some tests are serious, others are not.

9. Take pictures of the baby and print them. When we went home, we had pics of the babies around the house so we always felt they were nearby.

10. We called the NICU regularly to ask nurses how they were doing, how much they ate, did they have any setbacks, etc. Some nurses are less than friendly, but it's your baby and your right to ask. Don't let the nurses make you feel uncomfortable doing this.

I hope this helps. Please send my regards and best wishes.

WWW

Father to QQQ & RRRR (now 6-1/2 months old)

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We have a wonderful 8 month old that was born at 30 weeks (3lbs 12oz and 17 inches long) and needed to stay in the hospital for 3 weeks (they told us it could be 2 months so I think they pad it sometimes). He now weighs 21 lbs. (his low was 3lbs.) so have no fear, they catch up very quickly! It sounds as if the baby so far has no issues and only needs to stay in the hospital until he gains enough weight. Our son was also on the respirator on a very low setting to make sure that his lungs were developing (since they are the last thing to develop). They will not release a baby out of the hospital normally unless they are a minimum of 4.5 lbs. As soon as our son hit that final ounce they got him right out of there.

I don't know how far they live from the hospital but we were able to work with the social director at ours (St. Lukes/Roosavelt) and she found us temporary housing right across the street from the hospital. It wasn't the Ritz but it was clean (they were extra spaces not taken by the resident nurses, etc.) and we were so close and were able to go see him whenever we wanted. It was worth the $80 a day they charged us and it was covered by our FSA insurance money

(NOTE: they can change their FSA election once a year due to a birth of a child so they may want to max that out and use the funds for the hospital bills, temporary housing, etc.)

I went to the hospital 4-5 times a day and my husband would come around his work hours. They let you come 24 hours a day so there's no limit. They also will take your calls at any time so if you are away and want to get an update they will always take your calls day or night and tell you how the baby is, what the weigh in was, the doctor's updates, anything you can think of.

And it's a very scary thing to think they will be in the hospital that long but they really do get the best care and the more the parents are able to go and hold the baby it really helps. Doing what they call "kangaroo care" which means holding the baby skin to skin is supposed to really be helpful to them and as a parent I can tell you makes you feel WONDERFUL just to be close to them.

Sometimes they'll let you hang a little mobile and stuff (more for the parents than the kids I think!) A lot of times they WON'T let you breastfeed only because it burns a lot more calories for them and they want them to pump up (so they may feed them from a tube until they have the sucking reflex). But they will feed the child expressed breast milk from the mother so I rented a pump for the first 3 months.

The GREAT part is that you have full time nurses that will help you learn to hold the baby, bathe him, feed him, change a diaper (I knew none of this and couldn't imagine how people handle it that get to go straight home!)

Clothes are great from www.preemie.com. Shop by price and you can get some good deals. (they will grow out of them quickly!)

I hope this helps a bit. The time goes fast and the progress helps.

If I can be of any help please let me know. As you can see I'm passionate about these kids being OK. Our NICU was wonderful. If they have any issues with the hospital they have to speak up!!

ps. I also have a friend who delivered at 5.5 months and her son is ALSO doing wonderfully (he was under 2 lbs). I think knowing her story when I went in kept me from losing it. I had no fear at all that time was all he needed to get strong enough to come home.