Don't know how much time we have left - Mothering Forums

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#1 of 17 Old 07-09-2010, 04:39 AM - Thread Starter
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I just noticed this forum for the first time tonight, even though I've been posting on the site for a long time. I'm glad I did, because I've been needing a place to vent a little and hope that it will be okay to do it here. My son, Josiah, has Trisomy 13. He's been in the NICU now for six weeks. He has actually done so much better than the doctors expected him to do at the beginning, and we came very, very close to bringing him home, but he developed an infection that has made many of the problems that he already had much worse. I won't go into all the details here, but his lungs are starting to fail. He is requiring more and more oxygen and has had several episodes of apnea. Just a few days ago, he stopped breathing for a full ten minutes. His nurse was finally able to bring him back, and we are so thankful for that because we have had more time to spend with him. Every minute is really an amazing gift. But I know that he dying, whether it happens quickly in another similar episode or slowly as his lungs stop taking in the oxygen.
Because he is still with us, I don't feel like I can join up on any of the message boards that I have found for families who have already lost their children, but I am kind of already in the grieving process because I know what is coming. We are being face with many decisions right now too that are very difficult. My husband and I don't really feel like we can talk to anyone about these decisions (other than the doctors and God!) We have already agreed that Josiah won't be put back on the ventilator as it would really only prolong the dying process. We were asked if we would want to put a time limit on attempts at resuscitation, but we decided to leave it up to the discretion of the doctors and nurses because we trust their judgement. Our biggest decision now is whether or not we want to bring him home. Our first thought was that it was what we really wanted, but we aren't so sure now. We are afraid that putting him onto a low-flow oxygen (which is all we would be able to have at home) would make him more uncomfortable. We are afraid that he might stop breathing in the car on the way home and die on the side of the road somewhere. We are afraid that having him die at home might be traumatic for our other children if they happen to witness it. We are afraid that we will forever look at our home forever more as "the place where our son died" instead of a happy place full of good memories of our other kids. I'm already having a hard enough time even looking at the closed door to the nursery that he's never been in. I worked so hard on that room, painting, decorating, sewing bedding and curtains. All of the wool diaper covers I crocheted are sitting on the changing table, and it's all just awful to look at. I only go in there if I absolutely have to get a blanket or outfit for him, but it's almost physically painful. I have no idea what I will do with the things and the room or how I will deal with it when he's gone.
I'm sorry I've gone on and on here, but I just needed to unload a little. I have a caring bridge site where I share all of the information about Josiah and how he's doing, but I'm just not comfortable sharing anything much about my own grief. I'm fairly emotionally guarded by nature, but I guess when this much emotion builds up, even I need to let some of it out somewhere. Thank you so much for letting me do it here (and for reading, if you made it all the way through : )
Hugs and prayers to all of the other hurting women on here.

Gayle, mom to Reagan and Ryan, 09/15/03, Cade, 12/08/05 and sweet Josiah, 05/23/10-07/16/10
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#2 of 17 Old 07-09-2010, 05:12 AM
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I'm so sorry you and your family are going through this. It's ironic that the worst things that can happen bring out the best in other people, and make them want to help, to be there for you, etc. and it ends up being one of the most isolating experiences you can have. Sending hugs and healing thoughts to you.
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#3 of 17 Old 07-09-2010, 11:57 AM
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I'm so sorry this is happening, mama. Your family is in my thoughts and prayers.
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#4 of 17 Old 07-09-2010, 05:50 PM
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I couldn't read without sending a . I hope this part of your journey is full of kindness.

Ivory, partner to Tom, mama to Ella (12/9/05), Alice (12/8/07), and our newest addition, Rebecca (4/1/10).
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#5 of 17 Old 07-09-2010, 08:11 PM
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Thank you mama for sharing Josiah and your grief. I am so sorry that you have these horrible, awful hard decisions to make that no parent should have to about there sweet baby.

After I lost my first born DD I read a story about a family that got to bring there still born baby home and I always wished that I had been able to bring Sonja home even after death. I also would worry about the things you posted about in bringing Josiah home as well. It is a difficult decision and I wish you much peace around it.

I understand how awful it is to look at the things you lovingly gathered and prepared for your baby that ill never use them. You do not need to worry about doing anything with Josiah's things for now.

Much love and peace to you and your family.

Scarlett bfinfant.gif , DH Boris geek.gif , DS 1/29/08 Julian kid.gif DD2 6/7/12 babygirl.gif missing our DD 1/06/06 Sonja angel3.gif and MC @ 9 wks 11/18/06 Satchel  angel.gif

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#6 of 17 Old 07-09-2010, 08:16 PM
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I'm so sorry I couldn't read and not reply. I am thinking of you, your family and your sweet son. There is no way that anyone could pretend to know what the right thing for your family to do. Follow your heart.

I am wishing you much peace and clarity to make the right decision for your family.

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#7 of 17 Old 07-09-2010, 08:34 PM
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Oh Mama I could not read with out posting and sending s. I can not imagine the grief you are feeling, but I am glad that you have found your way here to express it. I am keeping you and your family in my thoughts and prayers and wishing you much peace and healing as you travel this path with your darling son.

Jenese Mama to Elliot 8/05 and Millie Jane 7/07 and Cecilia Kate 1/11
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#8 of 17 Old 07-09-2010, 09:39 PM
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vent all you need. sending you all love, healing, comfort, and many prayers.
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#9 of 17 Old 07-10-2010, 01:44 AM
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lucky mom to Oliver, 8/6/07, and Finn, 11/28/10, and wife to DH
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#10 of 17 Old 07-10-2010, 01:45 AM
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I read & had to offer a
I'm glad you found a place to let out your emotions. Sending lots of positive thoughts your way.

Erin - mama to my happy little guy, born April 09  kewl.gif

and my sweet baby, born July 12  babygirl.gif

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#11 of 17 Old 07-12-2010, 09:02 PM
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I'll be lighting candles for Josiah and for you this week in my church. I'm so very sorry, Mama.

"Hey, I've got nothin' to do today but smile." - S & G
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#12 of 17 Old 07-12-2010, 11:39 PM
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My heart aches for you. Sending you positive thoughts and prayers for comfort.

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#13 of 17 Old 07-13-2010, 01:55 AM
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mama i would not fear the repurcussions on your children.

death and the dying process has a sweetness to it that children respond to. my dd has been involved with death and dying since she was 3. i definitely think it helped her with her grieving process.

my heart breaks for you mama. holding josiah you and all your family in my thoughts.

 treehugger.gif Co-parent, joy.gifcold.gifbrand new homeschooling middle schoolerjoy.gif, and an attackcat.gif 
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#14 of 17 Old 07-13-2010, 02:33 AM
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I am praying for you momma.
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#15 of 17 Old 07-13-2010, 03:54 PM
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We are praying for you and your family and sweet little Josiah.

me & DP & our blended brood: DS(6), DD(4), DS(2.5), DS(2), and DS(6 months) & ... I my placenta!
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#16 of 17 Old 07-14-2010, 01:04 AM
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I am sorry to hear about little Josiah. I am going to pray for you and your family as well.
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#17 of 17 Old 07-14-2010, 09:48 AM
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