Advice from NICU Parents Please! My SIL Just Delivered a 1Lb. 6 Oz. Baby

Updated on November 12, 2013
F.W. asks from Cumberland, MD
16 answers

My SIL just went from a low risk pregnancy to mother of a 1 lb. 6 oz. boy all in one week due to progressing preeclampsia. She was only 26 weeks along. He seems to be doing well - breathing with the ventilator, heart rate at 130. She is recovering from the c-section and her swelling has gone down alot since she went downhill Sat. night. She also had fluid in her lungs but her lungs are improving now (giving her a medication for it as well).
Any advice from parents that have been there?
Any advice for us as their family so we can best support my brother and her during this scary time.
Pumping and breastfeeding help? The hospital facilities were phenomenal from what I saw.

First child. My brother is a rock but I'm concerned he is not touching the baby even though he's been told he can--I think he is still in shock and is trying to keep busy to cover it up. Little George was born yesterday midmorning

Any things to avoid as family members that got on your nerves?

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So What Happened?

Thanks for all the feedback! He's been calling to update me the past few mornings which I think is helping him to process things. He has insurance issues and leave issues to arrange (both are teachers but for different school systems unfortunately). Unfortunately also her HR department is not being as helpful as his so they are trying to balance their leave in way that maximizes how much paid leave they use and hopefully not have to use unpaid leave--on their own I don't think they can afford to have her not return to work.

He's realized he needs to let the family and friend network know to coordinate visits with him before coming so there are not too many people at once. They do allow other visitors in the NICU and he's been happy to have close family visit with him until my SIL can visit more. They did have some randomn church member from her church (her father is a minister) come visit without notice. My brother is very assertive so he'll take care of that issue so they can have privacy as she recovers. She is off her IV's and catheter now and can eat soft foods today. Too many visitors tends to wear her out. Baby is receiving some donor milk and she has been able to pump and get some milk already. I've offered to visit if he needs to go to his school to make arrangements in the evenings (I run a daycare so can't help much during the day). I let her know that if she would prefer some alone time then too it is no problem and I can do other things to help then instead. Yay with the nurses encouragement he cuddled little George in the incubator yesterday evening and by next week they said kangaroo care could happen. I'm coordinating some frozen meal prep with my mother and going to contact her mother so we can make and freeze a variety of things for them to have on hand. She'll probably be in the hospital another week with her lungs issues (they don't want it turning to pneumonia). I've also been tasked with getting her some nursing tanks so she will be more comfortable pumping.

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H.M.

answers from Dallas on

My friend had twins I think at 24 or 25 weeks. That was almost 15 years ago. They are doing very well today. Pumping is good if she can because ever little bit helps when they are that small even if she can't do it for long.

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S.M.

answers from Washington DC on

1. Its pretty normal not to want to touch the baby even if you can. He is so tiny and fragile that its scary. Babies that little are also really unstable and the slightest touch can set off alarms and that is also very scary. Basically the NICU experience is one of the most traumatic things a person can experience. I still freak out when I hear the monitors go off in TV shows - that fear that O2 stats are dropping or that there is a brachy event.

Breast milk is the best thing that the mama can do for the baby. Between the c section and preeclampsia it will take a while for her milk to come in. Up to a week - she just needs to keep pumping 8 times a day, drink tons of water and try to heal.

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T.N.

answers from Albany on

In 1994 I had a 26 week 1lb 11oz baby boy. My middle child.

He is now a second year international affairs major away at college.

They have a bumpy road ahead. They can use some things to keep in the freezer, gift cards to restaurants near the hospital. I pumped at the hospital and at home, I actually rented an awesome pump from the hospital, they had outstanding breastfeeding support. I had an 18 month old as well, we pretty much lived at the hospital. He was in for 3 1/2 months.

Neonatal care has made amazing progress even just since my son was born.

It is very stressful, but can have a very happy ending.

This looks like a good read.

http://www.preemiestoday.org/pages/stories.php

Congratulation on your very precious nephew George!

:)

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V.V.

answers from Louisville on

I was a NICU nurse.

My suggestion is to be as unobtrusive as possible, especially in the beginning. The NICU is overwhelming, and after an initial "holiday", where the baby seems to do really well, babies that premature often have a crash, which is very difficult for parents.

Don't pressure to visit. Most NICUs are locked down during RSV and flu season, so you might not be able to anyways, but wait until you're invited. Most NICUs have communal nurseries, so there are lots of babies in each room. With each baby, comes a nurse, their parents, equipment, etc. It's crowded. And most parents are so focused on their baby - getting updates from the nurses, taking to the doctor, participating in whatever care they are allowed to - that they can't be very responsive to guests.

Pick one person in your family who can call for updates and then disseminate that information to everyone. The parents will be too frazzled to do multiple updates AND you don't want to bother the nurse with dozens of phone calls for updates. Each time the nurse has to give an update to a family member is time away from that baby.

Bring the mom lots and lots of bottled water, for whenever she's allowed to drink again. She'll need it to produce milk for her baby. And bring magazines or give her a gift card to buy books for her kindle or ipad or whatever, so she has something to do while she pumps.

The hospital social worker will probably remind the parents of this, but the baby will need to be added to their insurance policy. A NICU stay can quickly get to be over a million dollars, so that will be important. If the parents are too busy, you could offer to help with that.

Those are the most helpful things I can think of. Best wishes to your new addition.

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V.T.

answers from Washington DC on

Pictures can't do babies like that justice. They are extremely small. When I saw my sister's 2 lb 26.5 week baby I was scared to touch him, so give your brother a break. My son was 4 lbs 9 oz and I was scared to touch him and he was 35 weeks.

I don't know as family members if what we did was right or wrong, but I just made sure I was there to listen to my sister. I know for her and for me, we were tired of people saying how blessed and lucky we were. It was true, but hard to hear when your baby is struggling.

My sister spent a lot of time in the NICU so food helps, either gift cards to restaurants or some easy to heat up meals.

Check out the Graham's Foundation (www.grahamsfoundation.org). It is a great resource for premies. They have a facebook page and you can post similar questions there. I think the facebook page is under parents of premies day.

My sister did her best to pump and breastfeed, but she was unsuccessful. If your SIL gets down about not being able to breasfeed, just support her. It's not the end of the world if the little guy needs formula.

My sister's son was born in January, at the height of flu season. Despite the fact that I always felt well, my kids were always sick, so I only got to the NICU once. Please if you are around anyone who is sick, please stay away, your SIL will understand. My sister also found great comfort and support from other NICU mommas, so maybe your SIL can look to other parents in the same NICU.

11 moms found this helpful

Y.M.

answers from Iowa City on

If the baby is in a NICU that is far from where the parents live, then gift cards to local restaurants/fast food places and gas cards would be helpful.

If the NICU allows visitors other than parents then you could go on off hours and offer kangaroo care. The more skin to skin contact the baby has, the better.

They are going to eventually need preemie clothing.

If you can, get them a breast milk storage kit (best thing I received for my preemie). I pumped and the NICU stored the milk for my daughter. They gave it to her through an NG tube until she could nurse.

My advice is to treat George like you would any other baby in the family. If he were full term would you buy him a gift? Send flowers? Knit him a blanket? If so, then do it.

Things that got on my nerves were everyone saying not to worry. Yeah, my baby can't breathe on her own. I'm going to worry whether you tell me to stop or not.

Ask them what they need or how you can help.

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C.O.

answers from Washington DC on

Mommy,

My NICU babies were never that small or that early. Mine were 4 & 6 weeks early.

My girlfriend had twins at 28 weeks. They are now almost 4 years old. They were in the hospital for 12 weeks and 16 weeks.

My youngest was born with pneumonia. He stopped breathing and flatlined on me when he was 6 hours old.

What can you do for your sister in law? You can ask her what she needs.

Does she need help with meals? I'm sure the last thing she's thinking about is preparing dinner for the family. So get a list of people who are willing to help supply dinners.

Does she need help getting to and from the hospital? With her C-section has she already been released from the hospital? She might need rides to the hospital.

Does she need help getting the nursery ready? When babies are born that early - most parents were NOT prepared to bring the baby home.

The NICU should have a lactation consultant on hand to help your sister in law with nursing and pumping. They should supply her with a hospital grade pump as well.

Being that early - they will most likely release her when she weighs 6 lbs for at least a week straight and is breathing on her own. I would prepare her to be there for at least 10 weeks - if not longer.

If they have other children? Can you care for the older one (in our hospital, no one under 3 was allowed in the NICU)? Can you have them over for playdates?

Make a list of things she needs done. Contact their church. Start a prayer chain to pray for the newborn. I know there are those that don't believe in the power of prayer - but there are those that do. Work with the church to set up someone to help out with the house.

If you have the extra money? Help with the Preemie diapers. As long as she's in the hospital - they will supply them. But once they get home? They'll need the smaller ones.

Stay positive. if you are there when the doctor's come in? listen carefully and take notes. If you are NOT there? Then buy a nice journal and pen for her to keep track of everything. They will be giving her a lot of scientific terms and she will need to keep it all straight.

Remind her to ASK QUESTIONS!!! It's OKAY to ask questions about her daughter's care, progress, prognosis, etc.

If they don't have a pediatrician already - can you recommend one or ask the hospital for a recommendation?

There's so much more!! I'll talk with my girlfriend to see what she learned from her babies!!

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B..

answers from Dallas on

I happy for the new life but sorry it had to be so soon.

Yrs ago I worked in a NICU.

Most babies go home around the due date.

A friend had a baby very young and for a while after he was home, she would only leave him with me. Look around their area for competent care for after he comes home. Home cooked food is always welcome for a recovering mom. So are gift cards to restaurants around the hospital. You can arrange for their care on a site like caringbridge.com. She can give you updates and you can enter them and tell her people's encouraging messages. You can tell those concerned about them, what their needs are during this time.

They are rightly nervous. Babies born this early have ups and downs. Just be there for them during stressful swings in his health. Pray for easy growth and no infections. First time parents are nervous enough. Ask if there is a premie support group around.

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F.B.

answers from New York on

Ask them what they might want. Be prepared with a list of ideas in case they are too overwhelmed to be specific.

you could take care of -
their other kids, basic household upkeep and maintenance. watering the plants, raking the lawn etc, collecting the mail.
you could offer to field calls from family and friends or send out a blanket e-mail and act as a personal secretary with updates.
cook some favorite meals for each and bring to hospital or have ready at home.
take fresh clothes, toiletries to the hospital.
set up a round robin of hospital visits, supplemental kangaroo care, when the NICU allows, so that the parents know that loved ones are near, even when they aren't.
pray, if that sort of thing is done in your family.

best,
F. B.

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D.G.

answers from Houston on

Check out http://www.preeclampsia.org/forum/ a wonderful group of ladies who have a lot of experience with preeclampsia and preemies.

No NICU experience here but unfortunately I have also suffered from severe preeclampsia. They are probably giving her diuretics to clear up the pulmonary edema faster, but unfortunately that can temporarily reduce milk supply. If she hasn't talked to the hospital lactation consultant already I would suggest she does for tips on pumping & boosting supply, how to rent hospital grade pump etc.

Make sure you are up to date on Tdap booster (for pertussis/whooping cough) and flu shot if you plan to visit NICU.

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K.M.

answers from Kansas City on

Welcome Baby George! They have a long road ahead of them.

Ask what they need. You can offer to bring food/snacks. Also, your SIL won't be able to drive right away, so you can offer to shuttle her back and forth from the hospital to home. You can pick up mail, take care of pets, do laundry.

Baby George will probably be in for months. I know they typically like to discharge the baby when he reaches term or a decent weight. You can offer to go sit with your brother, SIL, and/or George.

Your SIL can use the hospital breast pump. They should have a lactation room. She can also rent one for home. (We rented the hospital grade one when my heart kiddo was born and it was AWESOME! It's a $1200 pump--way better than anything you can buy.)

I would avoid tons of visitors. Baby George is very critical.

Prayers for your family:)

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M.K.

answers from Stationed Overseas on

Ask them what they need. Do they have pets at home? Do those pets need to be walked or fed? Don't push your brother and SIL. They are both probably freaked out by what has happened. They have gone from zero to a 100 in the last few days and are being thrown into the NICU world. Give them time to calm down and figure things out. You can help by not asking a million questions that they don't have the answers to. It is ok that he's not touching the baby enough by your standards. Babies born this early are easily overstimulated which can wreak havoic on their little bodies. Even just touching them can do this. Don't ask to go to the NICU. If they want or need you there they will ask. They are going to have tons of ups and downs in the next few months and will need your support outside of the hospital. Meals, laundry, clean house, gas cards, etc buy only if they want your help. I've had two preemies and while I appreciate the help I don't want people touching my stuff or telling me that everything will be ok. Sometimes its not and sometimes its ok to cry without anyone asking why. Welcome little George and I hope he has a short and uneventful NICU stay.

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S.R.

answers from Washington DC on

As a NICU nurse and mom to an ex 27 weeker (he's now 8), I appreciate your care and concern for your new little nephew. It is a scary experience to have a child in the NICU, but your brother/SIL will adjust to it over time. There is a lot to learn, and the nurses and doctors will keep them up to date with his care and what they can do to help him. You can just be an amazing support system - perhaps be the contact person when people have questions so your brother/SIL aren't getting bombarded with questions all the time. Meals that just need to be heated are a great idea, too. My NICU is pretty particular about visitors, and only the mom and dad are allowed to touch/hold the baby, so please don't be offended if you can't touch or hold him until he goes home. Plan on him being there until his due date. Sometimes it is earlier, sometimes it is later. The due date is a pretty good rule of thumb. Each NICU is different, but it has been my experience that there is not a certain weight a baby has to be before he can go home, and it is possible for a baby to go home on respiratory support, but that is something they will think about several months from now if it is even an issue at all at that point. Does the hospital have a March of Dimes affiliated with the NICU? They are a great resource as well. Congrats on being an aunt!

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T.H.

answers from Norfolk on

my sister had her baby early and although he was normal weight he still had to stay in the nicu for a couple weeks. what helped her was driving her to the hospital once dad went back to work sense she still couldnt with the c-section. another thing she may appreciate is you offering to go on your own to see the baby so that he has extra snuggle time (mom cant be there everyday all day and needs a break) sometimes being a first time mom with nothing keeping her away from the hospital needs to be told to take a break and eat and will feel better doing so if someone takes her place.

on the flip side she may just want company. it's boring sitting there alone looking at a baby that just sleeps all day. offer to be there when she is to give her someone to talk to. ask if she would like a book to read while she's there or a handheld game or crossword puzzles to pass the time.

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D.G.

answers from Dallas on

Ask them what they need in a week or so. Do they need someone to do their laundry for them ? Do they need someone to clean their house and make sure it is ready for them ? Do they need help with pets ? You get the idea. My son was born at 37 weeks and was over 9 lbs. But he still had to go to NICU for 1 week due to some issues we already knew about. So my situation was different (and I already had a 5 year old at home). But I remember being stressed, depressed, down, etc. I needed someone to sit with me and listen. Since he will be in NICU for quite a while, your SIL should be discharged as soon as she is well and get to go home. See how you can support her and your brother there. Also - I agree with the OP - don't get upset if you can't see or touch the baby for a long time. Most NICU's allow the parents to list approved visitors and some don't want anyone outside the parents in there. Depends on illness's floating around and how strict they are and how the baby is doing. All said - congrats on your new nephew !

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D.H.

answers from Louisville on

Definitely get the child on the insurance ASAP! That was what the pedi told my sister's then husband when that one was born so early back in the mid 80s!

It may take a bit of time for him to want to touch such a wee one - but he will, once things are settled a bit and the shock wears off. The nurses will know how to help/encourage his bonding!

Looks like the help has been covered - just watch and see what might come up. A facebook page could also be used to keep others up-to-date with whatever they wish to for them and the baby.

@Angie - not sure which Louisville you are from, but you may well have tended some wee ones such at this that I knew at Kosair/Norton's....

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