22 September 2010

There is more than one broken heart in this room

Today wasn't even that bad. Ewan wasn't in any distress or any danger. When I arrived at the NICU, there was a lot of activity. Baby Ewan was calm and alert at first, and it was wonderful to see him without the breathing tube. One of the cardiologists was finishing up an evaluation, and they had started to do another echo to see the effects of weaning Ewan off the prostaglandin.

A happy, morphine-free Ewan when I first arrived today
More people came in and out. They were taking blood gases and Ewan sounded wheezy -- the cardiologist explained he was doing okay, but that his trachea was swollen from the breathing tube that was in. Others walked in and out of the room, checking different levels of things, looking at different medications, making recommendations. Many different people were touching him, taking care of things that needed to happen, taking care of him and helping him -- taking tape off his face, changing tubes, and so on. They put a CPAP on him today, which helps him breathe better in a way that's less invasive than a breathing tube.

Ewan has another echo -- you can click on the picture to see it better, but he's holding on to the tech's ring and pinkie fingers as she scans him

Ewan didn't like it at all.

One angry boy :: he didn't really like getting the CPAP put on

You could tell the poor little guy was stressed out. I didn't count, but I think at one point there had to be at least eight people in that little NICU room. So many people were messing with him and he was clearly angry. And so I sat there and watched as other people were helping my baby and he tried to scream or cry, but sounded wet and raspy. And I couldn't do anything: couldn't really comfort him, couldn't hold him, couldn't do anything but watch.  

Rip. My. Heart. Out. 

Mama fell into tears more than once. And again when she came home.

I wanted to see about holding him, but because of his blood gases, it couldn't happen today. So I stood by his crib, and sang to him one of the songs I made up during my pregnancy. Baby Ewan, how you doin'? ... I invited his little fingers to wrap themselves around mine. He looked at me, held my gaze. I looked into the eyes I hadn't seen since the day he was born. I made sure I was close enough that he could look into mine. I rubbed his little hand, touched his chest, stroked his hair. I wanted to hold him even more.

And after tomorrow's Cath Lab test, it will be a long time before I'll be able to hold him again. In the Cath Lab, they will inject some dye into Ewan's body and get a closer look at his anatomy to know exactly what they're dealing with. This test will tell them a lot more about the course of treatment that will be best for him.

Either way, we will be holding our breath a bit tomorrow, wondering and waiting.

A calmer, quieter Ewan

When I left, he was so peaceful. He was sleeping deeply, breathing steadily, sighing sweet baby breaths. The nurse invited me to kiss him goodbye (Wait ... I can do that?!) and I did. I kissed his sweet head a few times, told him how much I loved him, and then cried again as I left. Cried on the way home. Cried in the parking lot at Target when I found myself rubbing my belly and singing to the baby who wasn't with me anymore. Cried on James' shoulder when I got home (he couldn't go with me today because he felt like he had a sinus infection). Cried and cried, just because. Cried because everything and nothing was wrong.

If I have to leave him, it's good to do it like this: sleeping peacefully, no distress. Sweet, dreamy baby breath.

I just want what any new mom wants: to pick up my baby and hold him, to be able to do that without needing a nurse's help or a doctor's permission. I am definitely hopeful that we will get that someday -- but for now, I think I'll cry a little again and look at some more pictures of his sweet face.


JD said...

There will be many people crying right along with you as they read this one - heavy heavy stuff. We're rooting for you mama. It's nothing like what you're going through but I totally remember the feeling of putting my hand on my belly and realizing there wasn't a baby in there to feel anymore. I'd lay in bed and feel phantom baby movements, it's the weirdest thing. Get some rest and hug your hubby, you guys have had a rough day.

stephanie said...

You guys can, and WILL, make it through this NICU experience and every medical experience that follows. I have never wished that I lived near anyone as much as I do right now. Instead, I can only very seriously and with MUCH emphasis say: You WILL get through this. And by you, I mean all three of you. The NICU is such a huge challenge, and on top of that, facing something that is totally unknown to you..it's terrifying.

And it's totally ok to cry, and you should cry.

You guys. You are STRONG, ok? All of you.

Shay said...

crying with you! praying you will get to hold him again soon and will rejoice with you when you can bring him home and hold him as long as you want! in the meantime, God is holding him and loving on him. you are an amazing mamma and I love hearing your heart and your struggles. praying for you! love you lots!

Sarah said...

Tears, for you and for Ewan. Wishing I could say something profound but will cry with you from afar instead. And pray . . . always praying, for all of the hearts involved here.

christianne said...

Oh, this just sucks.

When you were describing all the people moving in and out of the room, doing things for your little babe that you couldn't do, I could feel the wistfulness ... wanting to be the one doing things for him that he needs, not wanting it to be everyone else who can care for him right now ... even as there's such gratefulness for their expertise and attentiveness to his every need!

I'm so sorry, Kirst. I want for you, too, to be able to hold him whenever you want and for as long as you want, to not have to ask permission to touch or kiss him, to be able to just be with him, to be his mama.

You are his mama. But I know the longing to be actively caring for him from the strength and tenderness of your own hands and fullness of body and spirit is there. I want this for you.

Praying for you and with you, and will especially be lifting you all up tomorrow as this next big step is taken.

Love you so much.


terri said...

i'm so sorry. wish i had something smart or magical to say that would make it better. this is so hard, this separation when you have been holding him inside you for so long. praying for strength for the days ahead.

not2brightGRAM said...

Oh Kirsten, how I wish I could make it all okay for you. I know your arms must literally ache to hold your baby. I pray you feel the arms of your Heavenly Father holding YOU as you walk through these difficult days. <3

Katie said...

You can and will get through this! Remember that he HAS to be in this situation right now so you can bring him home to have ALL TO YOURSELF. You're doing what is best for Ewan and being the one standing and watching is so very hard. I've felt your pain.

Praying for an uneventful day tomorrow. Maddie and I are coming over for cardiology on Friday. If you'd like a visitor, we'd love to come meet you and bring you some goodies. Just email me if you'd like that, no feelings hurt if you don't feel like it. I TOTALLY get that too :)

Anonymous said...

So sorry. My words fail. Praying for you and Ewan.
Staci Lee

Nadine said...

:*( I wish you could hold him too! I will be praying hard that his cath lab brings you good news! The title is so perfect for this post. Your heart breaks for his and ours are broken for the three of you! I hope to hear soon that all worked out, he's ok, and going home to be with mommy and daddy!!!! (I know...it's going to have to take time, but a girl can hope, right?!)Much love!

Stefenie said...

It is hard watching your baby be messed with, irritated and stressed out. Then to top it all of you aren't even allowed to hold them, swaddle them in your arms and do what is a normal way to comfort them. However I know that you brought him peace in the way that you did comfort him by touching him, talking to him and singing to him. He doesn't need to be held to know that he is HELD.

You'll get the chance to ease those aching arms very soon!! {{{HUG}}}

Praying for all of you with the upcoming cath!!

joye said...

Oh, Kirsten. I remember those feelings so vividly. I've heard it said that a heart defect doesn't just break one heart, it breaks three; you convey those feelings perfectly in this post.

It is SO hard knowing that everyone else are the ones helping your baby, not you. I latched on to pumping (figuratively AND literally! :) ) because it was the one thing I COULD do. Sounds like you are doing the same.

Praying for rest for you and hubby, and that today's cath will give everyone all the information that's needed to best mend his precious heart.

Love and prayers...

Papillon Sky said...

Oh, Kirsten,
I can't imagine what you're going through. That has to be so hard. I'm sure you know about Kangaroo Care. Here's Nils Bergman's website:

He's a really nice guy (I've met him). I bet if you contacted him and told him your specific situation, he might think of ways you could still hold Ewan, even with all of those tubes on him. I would think it's stressful on both mama and baby to be apart.

I will be thinking of you and I hope he comes home really, really soon!!!

Big hugs!

Amy (Papillon Sky Photography on Flickr)

Steph said...

Oh wow, what a post. I love all your posts and am so excited Ewan is here and doing well. I will pray for all of you and you can do this - you will remain strong and the Lord will see you, your family & Ewan through this. Sounds like you had a wonderful birthing experience, which is so amazing & sounds like the care at the hospital is great for Ewan...sounds like he has a great team surrounding him and helping heal him. God bless you and all your family and little Ewan through these times.

Baby Hung said...

I'm crying as I'm reading your emotions! You're stronger than you think you are and you are stillin my prayers. He looks absolutely precious!

mkoleary said...

This makes my heart feel as heavy as it did when Nata was in the NIC Unit -after her last minute heart surgery at 7 1/2 months- and they (Dr's & Nurses) wouldn't let me cross through the glass doors b/c she would smell me and whimper for me and and want me and it was too stressful for her. Her Godparents came to rotate shifts with her Daddy to be with her.

You are, all 3 of you, in our prayers. Oh, and you have a BEAUTIFUL baby!!

Unknown said...

oh, this brings me to tears too.
you are a wonderful mother. you are.
and I love that you talked about kissing his sweet little head , just as I did above. :)

hope you slept okay last night. stay well and strong .

Unknown said...

I am close friends with Breanne Oshier and her Brother! I just want you to know my heart breaks for you and my soul is crying out to God in your son's name! I am so greatful that he had a peaceful night last night! May God continue to fill your hearts and provide peace to you all! Know there are so many of us praying for your family! Saddleback Church in Orange County has Ewan on their prayer chain, and Overlake Christian Church in Redmond, Wa is praying as well! If there is anything we can do, let us know!! Praying for you all!
Nicole Couevas

James jones said...

Wow, you seem to be very knowledgable about this kind of topics.`–’, parenting