Need help for parents of dying baby

[JenaW]

We are close friends with a couple who had a preemie few weeks after Natalie was born. Their daughter is now 8 months old, and has spent her entire life in the hospital. Things did seem to improve for a while, and there were several times she ALMOST came home. However, after multiple surgeries (niessen, G-tube, trach) she has taken a turn for the worse. We did not think she would make it through Saturday night. The father had already moved several states away to start serving military time. Luckily, he was able to get emergency leave and is here. The baby is still hanging on, although it seems that her little body is giving out. Tomorrow, the parents are most likely going to remove her from the ventilator and allow her to die.

I have taken food to the hospital a few times, but am at a loss what to do now. I will be going to the hospital tomorrow for a short time. Luckily, the parents are surrounded by lots of family. I want to do/take something, but am not sure what. I am pretty close with the mother, and I have horrible survivor's guilt because Natalie is doing so well comparatively. Can anyone recommend anything? I know nothing I can do or say is going to change things, but if I can do ANYTHING to make the situation any easier, I would like to.

THanks for your help. Prayers would also be appreicated.



Jera

[abigailsmom]

I don't have any suggestions of what to do or take, but your friends and their sweet angel have my prayers!!!

Edited to correct typo

[JTsMom]

I have no suggestions for anything to take either, but I'm sure you being there in support will mean a lot to them. Big hugs to you and prayers for them.

[Lovingliv]

Jera, I am so sorry that you are going through this, and that it is happening at all. I will continue to pray for you, and also for this family.

[punkrockmama]

I don't think you need to take anything. I totally understand that you want to bring them something. Food, etc is great and greatly appreciated. But really, you just being there is enough. I bet if you went and didn't say a word, your presence alone would give them a lot.

So just go and sit with them and offer some hugs.

You know, you're a really great friend. If your daughter was sick too, it must be hard to face what was probably your worst nightmare.

Peace to ya mama. I'll be praying for them and their baby.

[Jenn98]

I've never been in a situation like this, but the few times when I have had really stressful things going on (right after DD's birth and now bed rest with #2) the single most helpful thing anyone did was bring me food. I clearly remember yelling at DH that I didn't care what was for dinner I just wanted food to appear in front of me - any kind of food. Is there one of those places near you that you can make a bunch of meals for the freezer? Dream Dinners I think they're called (We have two places here by dif names.)

I wish I had more suggestions. The only other thing I can think of is maybe something to remember the baby by - a personalized frame, baby blanket, silevr cup, that kind of thing?

HTH
Jenn

[Mamma2004]

Jera, I am so truly sorry to hear that your friends' precious baby girl is not going to make it. What a terrible tragedy! They are undoubtedly both devastated and numb. I'm afraid I have nothing to offer but my prayers.

Thinking of both of your families,

Stephanie

[stella]

I am so sorry. My brother and his wife had a baby boy who was 11 weeks old when he died last spring, He never got to come home from the NICU. What they appreciated most was the closeness of their friends and the time that people spent with their baby boy. They loved talking about him and how special he was and how sad it was that he had died. They want to talk about him and they want to make sure that his short life meant something to someone besides just them. They did not resent their friends with healthy babies; they just really appreciated the time that their friends spent with thema nd their baby while he was so ill.

My prayers for your friends. I am so sorry.

[american_mama]

I hope it's not wrong to offer this suggestion now, while baby is still living. As our board may sadly remember, there is a brochure that offers advice on what to say and not say to help families whose baby has died. Perhaps your friend would like to know about this for sharing with their own friends and family.

Here's one more about SIDS, but general too http://www.sidsalliance.org/whenababy/when_cop_fr.html

And here's a general one.
http://www.marchofdimes.com/pnhec/572_15997.asp

Finally, in my googling, there are books that may be help other families dealing with this. Perhaps you could donate one in the baby's name to the hospital, a local library, or a local family organization.
http://www.amazon.com/gp/product/0960709843/102-8299323-8565751?v=glance&n=283155

I have a lump in my throat imagining what your friends are going through. I wish them and their baby peace.

[BaileyBea]

I am so sorry. I am saying a special prayer tonight. Take care.

[dylansnan]

I, too, don't have any real advise to offer. Just wanted express my sympathy to your friends. It really puts things in perspective.

Take care of yourself.

[annasmom]

Jera, I am so sorry about your friends. I will be praying for them, and you.

Do they have other children? If so, maybe you could organize some babysitting for them? If there will be a funeral/memorial service - perhaps you could offer to do something with that (and by that I mean anything, print out copies of directions to the cemetary, etc.) You could organize some food to be dropped off at the house for the morning of the service or for the week following the baby's death - a lot of family, visitors = lots of food.

I know you have your hands quite full right now, so I don't mean to put pressure on you. Do they belong to a church/temple that could be of assistance to them??

The most important thing to do is be there for the parents and allow them to talk about the baby. Definitely take your cues from them, but I would check your survivor's guilt at the door, and talk about the baby.

My brother and sil lost their daughter almost 5 years ago now, and they always say it is really important to them that people talk about her. I think it really helps their other children too to hear funny stories about their sister.

[JenaW]

Thank you all so much for your advice. I really like the pamphlets, and was actually searching for a book. As for the funeral, I think it will most likely be in the grandma's hometown, which happens to be about 6 hours from me, but only an hour from my parents. If my OB will give me permission to travel, I hope to attend, but am not sure. I see my OB this morning, and then will go over to the NICU. I think I will take some more food. I know she will have several family members around today, but I imagine none of them will want to go very far from the NICU. I too remember when Natalie was in the NICU just wanting someone to put food in front of me. If I had to think about it at all, I would not have eaten for those several months. Thanks to you guys and the super suppers, I did not have to think about dinner much at all. I thought about doing that for her, but I am not sure how long they will be staying locally afterwards, since her DH is already supposed to be in VA at an army base.

Thanks again for your advice and prayers. I knew I could count on you. If there are any more suggestions, keep them coming. I hope to remain a part of the parent's lives even after they move, as we have come very close in the past 8 months.

Jera

[daniele_ut]

Jera - I just wanted to add how sorry I am for this family. You are a good friend for reaching out to them and continuing to help.

Another really great resource is the website for SHARE Pregnancy and Infant Loss. www.nationalshareoffice.com There are links to some great bereavement support resources, book suggestions, a message board and links to find IRL support groups. I went to SHARE meetings for many months after Kiely died and they really were my link to sanity. They were the one place where I could talk about my daughter and no one averted their eyes or shifted uncomfortably in place.

It meant a great deal to me that people showed their care by bringing meals and by taking a few minutes to ask me about Kiely, look at pictures, call her by name, and even cry a little bit with me. The road they have traveled is far longer than the one we were on with Kiely, so it is a bit different than our experience, but there are definitely resources at SHARE that can help.

[loewymartin]

They may want someone to take pictures of their baby, as well as them with the baby. While it is a painful thing to go through, they may come to cherish pictures when she is gone. You might want to create an album of pictures, momentos, etc. of their baby girl.

I'm so very sorry for what they are going through. I will be thinking of them :hug

Michelle
Mom to Alia born 5/16/02 and Kira born 7/30/05

[lmintzer]

Jera,
How very very sad. I am so sorry for your friend. After 8 months of hoping and praying -- now they will lose their precious child.

You are a wonderful friend to be there supporing her. Survival guilt is so normal. To recognize it and still stay by her side is a wonderful thing in itself. Many would just run away.

I like the idea of offering to take pictures of her, her dh, and her daughter. It's something they may or may not be thinking of now but will appreciate later. I also like the suggestion of a scrapbook or an album. Even if you don't have the time to put it together, you could get the album so she could do it later. Food is always good, too. She may not feel much like eating, but when food is put down right in front of her, she may nibble a bit.

I'll be thinking of them (and you!) during this sad time.

[egoldber]

I am very sorry for your friend's situation. No one should have to make the decision to take their child off a ventilator. I've been there and its beyond description horrible.

As with any loss, they will need help in the days afterwards. Big things you (and others) can do to help:

- Offer to take any older children on playdates so that they can have time alone to do things they need to do (make funeral arrangements, spend some time alone as a couple). Continue to offer to do this for several months. Sometimes the grief is actually worse several weeks after the death, when the "numbness" has worn off and the reality sinks in.

- Food is good, but take some time to know what they honestly like and don't like. It sounds ungrateful, but we ended up with a freezer full of food that we didn't like and/or couldn't eat and it became yet another thing that I was angry about having to deal with. In the end all the food we got was more of a burden than a blessing until I gave myself permission to just throw it away and move on. And I HATED it when people gave us food in dishes we had to return.

- If you ask them what they need, make it a VERY concrete choice. Say "I'm going to the grocery store. Can I get some milk for you? Are you out of bread and deli meat?"

- Be comfortable sitting with your friend while she cries. And don't be afraid to mention her daughter. There is nothing you can do or say that will "remind" her of her loss. It is on her mind all the time.

- Offer to sit with your friend as she goes through her child's things. Its horrible having to sort through all the hopeful things you had purchased for your child trying to decide what to keep and what to return. Offer to do those returns for her.

- Remember them in the days, months and years ahead. There is nothing worse than feeling like people have forgotten your child. Taking the time to remember their DD's birthday and the anniversary of her death are HUGE things that will be very meaningful to them.

[alexsmommy]

I don't know how much you want to spend, but I know that there were wooden rocking chairs donated in different children's names in our NICU - I thought that was a truly thoughtful gesture on many levels. So sorry for their pain and loss.
Alaina
Alex Feb '03

[JenaW]

Beth

Thanks so much for your reponse. All of you gave me some great encouragement and ideas, but it really helped to hear from those of you who have been through a similar situation.

They don't have any other children...this was their first. Not sure if that makes things easier or harder.....probably both. I am not sure when they are planning on leaving here. I am pretty sure the funeral will be in NY, and then they will be heading to VA, where DH is starting active duty in the army.

I hope to be able to go to the funeral, and I really want to remain in contact with them. I am not sure if having Natalie home and relatively healthy will be a sad reminder for them. I am never sure how much to talk about her....like a PP said, I try to take my cues from them, but I am sure they are just being polite...I am not sure they really want to hear much. I don't think I would if the situation were reversed.

Thanks for the reminder that she is obviously never going to forget her daughter, and my mentioning it is not going to exacerbate her grief. I am horrible with dates, but I plan to try and remember her anniversary of the death, and my baby is due on her baby's brithday, so that one won't be hard.

Is it okay to send a book on grieving, or some of the websites mentioned? I don't want to presume that I know what they are going through or what they need now as I have never been in the horrible situation of having to bury a child. I just hate feeling so helpless. I wish I had a magic wand that could make things better.

Jera

[pb&j]

Somebody gave me a book on grieving, and I really resented it. Like that process would be any easier with a manual! Then again, I really resented a lot of things when my daughter died.

I second Beth's recommendation to check up on them several weeks later. I had a friend call to check on me six weeks later, and it was such a relief/release to talk with her. And yes, remember those anniversaries.

Natalie may be a very sad reminder to them. I had a friend who was due the same time I was, and I still hate seeing her and her baby. She was pretty oblivious to the depth of my loss, and I really just don't have the energy to "coach" her through how to treat me. Sounds like you're very thoughtful and mindful of your actions. I'm sure she'll appreciate your efforts.

-Ry,
mom to Emma, stillborn 11/04/04
and Max, 01/05/06

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