Saturday, October 10, 2009

The Weight of Grief

Last night, although she is fine now, my daughter stopped breathing. I realize that, for many of the parents of preemies, an apnea spell isnt considered a big deal. But it's a big deal for me. You see, I've never seen that respiratory rate hit "0" and the word "APNEA" flash across the screen, while the oxygenation drops and flashes and the heartrate begins a descent towards that horrible zero.

During Maya's care time, Bobby would set his oxygenation alarm off but would bring himself back. We joke that it is sibling rivalry. He's saying "Folks, the show is over here" while we are busy focused on his twin sister. We did her bath (she cried, I got to dry her off and she just clung to me as if I were all there was in the world) and then Peter held her. She just collapsed on him. Her respiratory rate was high, well over 100 breaths per minute for the entire half hour (it would go back and forth between normal and high). She was so wiped out from her bath, which she looked completely miserable in. She went back into her isolette and we began Bobby's care, complete with a bath (he wined but didnt really cry, Peter dried him off) and then his holding. As Bobby was being weighed, pre-bath, Maya's monitor went off and, when I looked up, I saw that glaring zero, blazing in a red background. APNEA is flashing across the monitor. The nurse seemed unfazed. "It's okay," she said. "She'll bring herself back."

But for those seconds (which, in retrospect, I am sure was all it was even though it felt like a lifetime to me), my daughter wasnt breathing. My beautiful, precious girl... I looked in on her and she looked so peaceful, so... alive. Yet, the monitor continued to tell us she wasnt taking in air. That she wasnt breathing.

The nurse was right. She did bring herself back without stimulation or intervention and she was fine the rest of the night. But I wasnt. I silently cried the entire time Peter held Bobby. And once we hit outside, to where we call "Sophia's garden", I broke like the Hoover Dam. Peter just held me while I sobbed. The weight of all the grief finally spilled over and I couldnt control it.

I am so tired of being told how grateful I should be that Bobby and Maya are alive. That we should count our blessings that they "at least" made it through their 27th week. Do these people not think that I know that? That every single damn day is a miracle and a blessing? That I thank God every second for the fact that they seem to be healthy and doing so well? Can they not fathom why I am grieving a pregnancy that ended too soon- not because I wanted to grow bigger or feel more pregnant but because babies NEED 38-40 weeks to fully develop?

Even though they died, I am grateful for every second with Nicholas, Sophia, and Alexander. While some people acknowledge them and say things like or "God had a plan for them and they just needed to make sure their brother and sister got here" or "they paved the way for Bobby and Maya to be born safely" and think they are being kind, (and, again, I know our little saints were watching over their brother and sister), can they not understand that the price was high? That our children are dead; they arent coming back. I cant go and tell them "thank you" and give them a hug or kiss. I hold a marble box to my breast instead of their mouths. I clutch a blanket instead of their hands. I listen to rain falling against their nursery window instead of their cries. I will never be able to see them face to face until I leave this world. They paved the way? Is that some sort of consolation prize?

Mothers, regardless of whether or not they have lost a child or had a baby born preterm, have an instinct, an innate need to protect their children. We kiss the booboos. We stroke their hair to mend their broken hearts. We laugh with them. We cry with them. One of the earliest ways we do that is by getting them here safely. We dont smoke or drink while they are inside of us; we nourish them with good food and positive words.

We give them those 38-40 weeks.

And, when we fail (which preterm mommies believe they have done, regardless of the kind words of "but you got them this far..."), we have failed that our 2nd task (the first being to love them unconditionally) as a parent. We have failed to protect them. To give them the best first start that we could.

And for that, I wept. For those missing 12 weeks. For the cervix that wasnt strong enough to hold Nicholas, Sophia, and Alexander inside. For the body that couldnt support our miscarried babies. For the uterus that just couldnt expand anymore to grow Bobby and Maya. For the IV sticks and the bright lights and the overstimulation and pain that their little bodies have had to endure and continue to endure, all because "I got them this far...". Because I couldnt do more. Because my body couldnt. Because it failed. Because I did.

And, to Peter's credit, he just held me while I cried. There were no comments of "You didnt fail them" or "You got them this far" or "You should be grateful." There was just understanding because he knows well that no matter what he says, the guilt will always be there. That no matter how old they get or how well they do or how right the world seems to be, that under the surface, I will always want to tell them how sorry I am. How sorry that they cant grow up with their siblings. How sorry I am that their first moments- weeks, months- were not with their father and I, but in a sterile NICU, where nurses and doctors spent more time with them than we were able to do.

When the crying ended and the kisses from heaven began, we walked to the car, quietly. There werent words for what we had shared or for the what are going through. Just silent prayers. God, please, please, just let them be okay. In spite of everything else. Please. Let them be okay.


This morning, I got up and after pumping, I went for that walk. It is a dreary day. It rained last night and the world outside is in a fall Technicolor that only rain can provide. I walked through the park and, as I came through the housing development to walk home, I passed an elderly couple. Drizzle had started to fall. Kisses from heaven. I smiled and the gentleman said, "It's not a great day for a walk."

But to that, I replied, "No, it's a perfect day. I love the rain."


Catherine W said...

Oh Michele. I'm so sorry, it is always terrifying. Just terrifying to see that plummeting on the monitors. No matter how many times you see it. I'm glad that Maya picked herself right back up.

I think it can be hard for other people to understand, that burden of guilt that has been, for me anyhow, part and parcel of the premature birth of my girls. I still cry every single day because I couldn't keep Georgina or Jessica safe. Just because Jessica is still here with me today doesn't take the guilt I feel over her early birth away sadly. You do grieve the pregnancy, the protection that you feel you didn't afford your own children, the time that have to spend in the hospital environment. I will always feel that I failed.

I want to tell you not to feel guilty, that you didn't fail them. You really didn't you know? You are such a beautiful mother to all your children.

But I know how useless that would be, I feel the same way. If I ever see Georgina again, I'm sure that "I'm sorry" will be my first words to her.

Hugs, hugs, hugs. xoxoxo

Sprogblogger said...

Oh honey, I am so sorry you're feeling so low. You are so strong, and you have been through more in the last few years than most people ever do. On top of that, you've been through more just in these last few weeks than most people do.

Nevermind that your babies are doing so beautifully well, it's still heartbreaking to have to visit them instead of having them at home where they belong. I can't even imagine the terror you must feel when things - even "little" things - go wrong. You've been through too much and it's no wonder you're feeling exhausted and emotionally drained.

What impresses me the most about your story is how your attitude throughout these ordeals has been so courageous, so determined. You are my role model for "how to deal with overwhelming adversity with grace and compassion". Cut yourself a bit of slack, eh? Be gentle with yourself right now - you deserve it.

It may not comfort you right now to hear people say, "But look at how far you got them" but it is the truth. You are their mama who adores them - and your babies are surely deriving sustenance from you just as much as if they were still in your womb. You feed them, your scent surrounds them, and you love them. They feel this and they know you. You are still their world, even though you cannot be there 24 hours a day.

We all want nothing but beauty and light (or soft rain) for our children, but the world isn't arranged like that. Bobby & Maya may be starting out their lives in a less-than-ideal way, but they've got a mother and father who will be able to teach them - by example, not platitudes - to be strong in the face of adversity, and to try to welcome rain even when we're wishing for sunshine. That is a wonderful gift, and despite the cervix that wasn't strong enough, or the uterus that lacked stretchiness, it shows me that you were meant to be their mother.

And I think you're doing one heck of a fine job, my dear.

Be well.

Jill said...

I just came across your blog. I gave birth to twins at 24 weeks 5 days on August 12, 2009. They passed away on Aug 12 and Aug 16. It helps me to read blogs like yours so I know all the feelings I am having are the same or similar to others.

Maya and Bobby are beautiful and my thoughts are with your angels. I love how you said the drizzle is kisses from heaven. That is so sweet.

Carrie said...

Oh I have no idea how terrifying ANY apnea spell would be. I would lose it and am so glad you are so level headed.

It is OKAY to mourn the missing weeks in your pregnancy. Those weeks you can never get back and although people tell you to be glad, it is all right to miss them.

We all know you are SO grateful for your healthy babies and that each day you give thanks. What an awesome mommy you are.


Kate said...

I can't imagine what you felt when you saw the number zero. I'm so sorry.

Its good to acknowledge your feelings, the only way to work through them is to face them head on.


Justina said...

Oh Michelle, tears are running down my face as I read this. I can't imagine the pain that you've had to go through. Yet you've been able to remain so strong despite all that. Good for you for being able to grieve and let it out. There's not anything that I can say that will make it better, but just know that you are in my thoughts and prayers always. All of your babies - Nicholas, Sophia, Alexander, Bobby & Maya, as well as your angels in heaven are so lucky to have you as a mother.

KristieMcNealy said...

I'm so sorry. Apnea spells like that are an agonizing thing to watch. I'm glad Maya was able to pull out of it by herself though.

The guilt is very real. So is PTSD after all you've been through. I know I still have episodes where I feel very guilty and sad, and our preemie is almost 4. When she struggles with something, I feel like it is my fault.

I hope you have a much better visit today, and that you can enjoy all those baby snuggles.

Take care.

Tammy On the Go said...

sweet friend, I hear your words.

Michelle said...

That must have been scary! Im sorry this post broke my heart and brought tears to my eyes. I wish there was something to make it better. This must be so hard for you! Just wanted to let you know you are in my thoughts and prayers.

Sophie said...

Oh Michele I have tears for you today. I remember the first time Jordan had an episode like this. It was terrifying and it broke me. :(

Thinking of all your angels, those on earth and those above... and of you two because I remember how it feels. Underneath the brave face of riding the nicu rollercoaster, lies a lot of fear and pain and anxiety. When Bobby and Maya come home I will be so happy for you.


Kim said...

your post brought tears to my glad she's ok

djsmom2007 said...

I am so sorry for the scare of Maya not breathing. I am glad you were able to grieve when you got outside the hospital. It is healing when we take the time and energy to do it. All of your babies, all 8 of them, are still your babies and you will miss 6 of them for the rest of your life. May you be filled with God's peace.

Reba said...

big hugs michele. i know how unbelievably scary that must have been to see maya not breathing for a few seconds. :( i know you don't need to be told, but i also don't think you could hear it enough...that you're doing such a fabulous job being their mommy. all of them.

Anonymous said...

Your optimism and honesty are inspiring. I read every day, and am pulling for all of you.

Anonymous said...

Watching your child have an apneatic episode sounds terrifying. I hope such things stop soon and they grow incredibly chunky and strong and ready to go home soon! :)

I wish your older children could be there to greet these two as well. I'm sure all the trite answers are cold comfort when you just want them here with you.

All the best, and my good wishes to you for having your children at home soon.

Barbara said...

Oh Michelle, you are the most courageous, the most hopeful, the best Mama those little darling could ever wish for. And you get to weep as much as you need to.

Sending love and growing vibes to Bobby and Maya.


Anonymous said...

Michele, I just want to give you a huge hug right now. I can imagine how you are feeling. Its amazing how that guilt eats away at you and its hard. Everyone tells you that is not your fault, but you said it perfectly...motherly instinct to protect our young and when things do not turn out as they should, we blame ourselves. Try to be kind to yourself. You are doing all that is humanly possible for your babies and that does count :) I will continue to keep your beautiful babies in my prayers. *hugs*

Alisha said...

A very beautiful and poignant post.

one-hit_wonder said...

I think you have EVERY right to grieve - I wish people would just let you feel the way you feel.

I'm glad Maya and Bobby are ok - they are adorable - and hope you're hanging in there.

Mon said...

Im glad Maya is ok, but again, thats actually very normal, your nurses are right, you will need to learn to trust them. Maya is so sweet and will be fine and home in no time !

If you dont mind asking, what would you like people to tell you regarding the first babies? Could you maybe make another post? I am sure that lots of peope who mean well are saying things that may hurt the parents and maybe you could help them to know what to say as they probably dont really know not being in that particular situation (i have a friend who lost a baby on Thursday and I totally dont know what words to use, if any, so that would be helpful)

Terri Jones said...

Sending you all my love, hugs & prayers.

Queenie. . . said...

You have been through a lot, and have much to grieve, in addition to having much to feel blessed about. I hope that someday soon you will be able to let go of the guilt, though. Sometimes bad things just happen, despite our best efforts. Let yourself mourn all that you have lost or missed out on or been unable to do, and then set that guilt free. Use that energy for something positive and life-affirming.

Debby@Just Breathe said...

I can only imagine how awful that moment was with Maya. I'm glad she was able to bring herself back. It had to really hard to leave. I will pray for both of them. I am sorry that you carry so much guilt. ((HUGS)) Will they come home with monitors?

Anonymous said...

sometimes there is nothign to do but grieve. Our little sparky couldn't be born, something went wrong, but it doesn't mean I don't feel like as his mother I SHOULD have been able to do something.
I just have big hugs for you sweetie.

Anonymous said...

Thank you for so elloquently sharing what so many of us feel but yet so easily forget. The Guilt of Motherhood is hard to get past. I still have days of it myself.

My hope for you is that you may find your pathway through the guilt and grief to a peaceful tomorrow.

Anonymous said...

Surrounding you with love Michele. Always. xxxx

quadmom said...

Oh my gosh, your first sentence made my adrenaline start rushing through me!! I am so, so glad that Maya is okay. I cannot even begin to understand the kind of emotional strain you are under (and have been under for so many years). People just don't get it and most will never say the right thing (if there even IS a right thing) because only you will truly understand how much you've gone through and the depth of your sadness. I am praying hard for your babies (all of them), and I hope you and your family don't have to experience another apnea spell. Big hugs to you, Michele.

ezra'smommy said...

You are so entitled to all of that grief...and to let it come pouring out when it needs. You have been through so very much, lost so very much. Even when Maya and Bobby live long healthy lives, that grief will always be interwoven into yours. Sending hugs and love.

Mother Knows Best Reviews said...

Michele, this had me bawling - that grief and guilt, we all know it. Even just the name "incompetent cervix" implies such failure on our part. We would never choose this, so it's not our fault - but it's still there.

Hoping that the twins keep improving daily, and that there aren't any more bouts of apnea.

Anonymous said...

I know too well that sense of failure and guilt and grief over watching my child spend his first weeks in the NICU instead of in my arms. Thank you for expressing so eloquently what I've never been able to put into words.

Heather said...

MIchele, I just want to say how sorry I am that you know such pain. It isn't fair...


I thank God that Maya is ok. I never had a child go to "O" but when my dad had an operation last year they gave him to much morphine (I believe that is what it was). Well, we sat there and watched the monitor go to "0" and he would stop and then gasp for air. It was so horrible. I thought we were going to lose him. Thank the Lord we didn't.
I read this and the next post you wrote. You spoke right from your heart, thank you.

NancinaT said...

As someone else posted, I appreciate your honesty. I can't even imagine to begin to know the pain you have suffered, and continue to live with. I pray for you and your family every day.

You write about feeling guilty that you have somehow failed your children. My son was born healthy at 40 weeks and, ironically, I feel guilty (and continue to do so) that I have failed him somehow. I constantly think I could do better for him: I hate that he spends 45 hours a week at daycare. I hate that, when he wakes up crying in the middle of the night, I selfishly want him to fall back asleep on his own so I don't have to get out of bed to comfort him. I hate that I hate giving him a bath most nights. I feel like a horrible mom for these things, and others. But you know what? I'm coming to the conclusion that all moms feel that way. That no matter what we do, even though we give it our all, it's never enough.

Michele, I don't know you, but I KNOW that you are giving your all to your babies.

Kate said...

sweet Michele,
sending love
and wishes for NO MORE SCARY THINGS
you all deserve a lifetime off.


Bluebird said...

Ah, sweet girl. What a true and beautiful post. I understand your tears, and I'm just so sorry you had a reason to cry them.

I admit I can't quite keep up with your updates :), but know that I think of you, Peter, and all your little ones often. I'm so thrilled to hear that Bobby and Maya were moved to the TCN :) Wonderful, wonderful news.