Oh man I can’t believe the fight in Ruby. Little monkey did indeed have a secondary infection in her lungs. Strep pneumonia…so Tuesday brought more bad news but treatable news so I decided it was actually good news. It’s a puzzle we are putting together and every answer we get is a great thing.
Last Friday I never thought I’d be here long enough for our first bouquet of flowers to die.
The pediatric floor is full so we got the boot from our private sleeping room. There is only room for one of us in the ICU room and last night Andy stayed and I went home…I am hoping I can nurse Ruby today in which case I won’t be leaving until she does so this was my last chance at some sleep. I was actually so happy to wake at 3:30am to cuddle Margot during a bad dream. I love the small, normal peeks into my life. They make me swell with hope.
This has been so hard on Andy and me. Us. I’ve never felt more thankful for and in love with him. We’ve had some tough conversations and stress doesn’t always bring out the pretty, productive side of me. I am grateful for his solid, measured confidence because, at times, his strong arms literately scoop me up and push me into the present. And, presently, we have a crazy strong girl who loves life.
Yesterday was a decent day. It was the first day we didn’t hear of an additional complication. It was the first day Ruby had decreased oxygen support instead of increased. She actually woke, lifted her head off the table, reached up and pulled this horrid, giant contraption out of her nose and her feeding tube out of her mouth and yelled. She was all K, I’m done with this now. So she told us she was ready for a ‘gentler’ set-up. And chicken got it and chicken rocked it. She is off of the neon yellow IV nutrients and only getting my milk (fortified with formula) in a constant trickle to her belly. Progress.
Ruby breathed 100-130 breaths per minute for two days. Her tiny frame heaving rapidly, desperately trying to compensate for the lack of room to swallow air. Fighter. I am so proud of her. She still has spikes but she is averaging 50-90. I think I will have visions of the monitor with colored lines explaining my child’s life for a long time.
Last Friday I was so sad and disheartened over the invasive tubes up Ruby’s nose, the nest of wires we had to negotiate to just hold her. At that time, everything seemed so cold and institutional and wrong. Now, I can’t wait until she is back to that scene. I think back on that room and it seems so cozy and happy. We had piles of friends telling stories and sipping wine. Ruby swaddled in my arms or asleep on Andy’s chest. I could live in that room, in that state forever. All I need is my family and friends and the pitted out clothes on my body. And coffee.
I am so annoyed with the mechanical whop whirrrrr whop whirrrrr of my breast pump. I hate sitting next to her as she roots around for me, my milk, and I can only give her a pacifier and a lullaby. I spilled three ounces of milk this morning right after I pumped it. I just stared, through my bleary eyes, at the creamy sustenance as it spread over the industrial counter top under the fluorescent lights of our room. Shit I can’t wait for this to be a story we tell.
Although I can’t see the brilliant, fiery ball through the thick, low fog that hangs in our valley this morning, I know the sun is rising out there.
40 Comments
Nicci, I know the fuzziness of living in the hospital and waiting for your baby to get well. I remember marking the hours of the day by the nursing shifts and the anxious moments that accompanied the morning rounds. I remember wanting to rip the tubes, the monitors off Ellie’s frame just so I could hold her close. But I also remember the joy of leaving our sterile hospital home and emerging into the fresh air with a healthy strong child in my arms. May you endure to provide the tender touches, the soft whispers and the mommy love that will support Ruby’s recovery. And may Ruby’s strong body conquer this infection and find equilibrium and wellness. We are PRAYING and sending love, compassion and strength. In empathy and prayer, Darby in Helena
When my DIL was so sick in the ICU in Great Falls (complications from gastric bypass), my son would call every day and when she started needing less oxygen and less help breathing, we finally exhaled. I am SO happy for the babe’s progress. I will post an update to my prayer group and we will continue to pray. For you too, Mom, to be strong.
Hi Nici,
I had taken a small break from your blog after reading your Hump Day Nuggets from last week – which, incidentally a mama friend of mine from Chicago sent to me with the note: “thanks for turning me on to this woman’s blog – you’re right, she’s so inspiring.”
Anyway,
I just caught up on what you’re going through. Unreal.
Can’t adequately describe how much I feel for you and how floored I am by your strength. Andy’s strength.
RUBY’s STRENGTH.
I am so glad you are so well supported. I’m thinking of you all.
Dear Nici,
I have been trying to put together a useful comment since you started going through this terrifying and trying time, but everything I tried to write didn’t seem right. So, right or wrong… here goes…
Please know that through your blog, you have successfully garnered a very strong and true support group of we strangers who have the privilege of peering through this tiny internet window into your inspiring life. It seems strange to say that we truly care about you and your family, but it is true. Your words have made us care… and long before you came into this hard time. Your blog makes me want to be a mother and it makes me believe that if anybody can make it through an event like this, you and Andy and Margot and Ruby can.
I also wanted to mention that I have the unusual ability to maybe understand a little bit of Margot’s perspective, and I want to tell you not to worry about her. That she knows you love her and even at her age she understands that you need to be with Ruby more often than you can be with her right now. I was three when my brother was born with a rare and deadly cancer, previously only ever seen in adults. He had it in the womb and was diagnosed at 10 weeks. It took about three years of relentless surgeries, chemo and radiation sessions, long hospital stays, and late-night scares to knock it out of him, but he beat it. During that time, I spent a lot of time with warm and caring family members when my parents had to be at the hospital, but I saw my parents too, and while I missed them when they were away, I never doubted their love for me and I was not unhappy. I knew my brother was sick and I knew my parents were sad and tired and I had a great support system. I know that it is the same for Margot and now that Ruby is on the road to recovery (it’s wonderful how much her breathing has slowed!), this will soon be a short blip in Margot’s memory and all will be well. I know that parents in situations like this often worry that the other child feels neglected. From the little I know of your family and your parenting and your strength, I just know that this is not a problem for Margot. She understands and she feels love and she is well. And because I watched my brother beat that horrifying disease, I know how strong babies are. They are so tough and resilient. Ruby can and will beat this. She already is. And you and Andy are right in understanding that stress and exhaustion can be hard on a relationship and that it is best to just blindly and fully support one another right now. You are doing all the right things and I fully believe in your ability to get through this in every way.
You all are in my thoughts every day right now.
I read this and my heart overflows at the courage and strength that you and your entire family have as these moments tick by. I just finished describing my daughter’s Birth Day in my blog – and just know that in thirteen years (even less for Bug) these hard moments will be just memories, and you will look at your two girls and have so much to celebrate. As you already do.
Things are looking up. I’m feeling really good about the care Ruby’s getting at the hospital. For awhile there I was starting to think I should drive myself up there and start yelling at the doctors. 🙂
I’m glad your mom’s there now.
I love you.
maybe you don’t feel like it right now, but you are so amazing. taking the time to write this all down, to share this experience with the giant web of people who send you love and support, is so . . .amazing. at a loss for words.
i just came back to my desk after morning rounds and was so glad to check in and hear the good news. it’s funny; i live (professionally, at least) in the world you have nightmarishly inhabited for awhile with Ruby. i think a lot about each family’s experience when i encounter them here, but knowing that you are now one of many families going through this . . . i don’t know what to say. i am just grateful and honored to bear witness to your experience, and continue to send much love and light your way.
i love that buddhist prayer someone posted and repeat it often for all of you. here’s to Ruby’s recovery, healing for all of you, and looking forward to when this experience is a story to recount instead of live in. xoxo
Tough going nici, but soooo relieved that she is still fighting the good fight. I love the words from the post above:
” Please know that through your blog, you have successfully garnered a very strong and true support group of we strangers who have the privilege of peering through this tiny internet window into your inspiring life. It seems strange to say that we truly care about you and your family, but it is true. Your words have made us care… and long before you came into this hard time.”
This is sooo true. We all are just rooting for you and your family. Keep up your spirits happy thoughts and let others carry you. xoxo
Thanks, Nici, for taking the time to update your blog. I have been checking it constantly not wanting to bother you or your mom via phone. It is hard for other family members to not be right there sharing this with you and yours. I think about Margot a lot, but I know that she is in good hands with Grandma Terri and Grandma Joan! And please give my love Andy…my other son! Sounds like all of the good thoughts and prayers are working. Wish I could give you both an “Auntie Deb hug”. Love you lots..Aunt Deb
Tender, graceful, glass teardrops.
The other thing I said in the comment that disappeared was how I want to come over and sip tea in your living room (and hopefully not spill it on your rug this time!) and oooh and aaah over new baby things and funny toddler things and birth stories and life. You WILL look back on all of this… soon.
LOVE and kisses with “intention.”
Casey
I read your blog often and I had to comment now to send my heartfelt wishes for a quick recovery for your sweet baby girl. I cannot imagine what you are going through but you can tell in your writing what a strong woman you are. I will keep you and your family in my thoughts and prayers.
Karli
Those wilted flowers are beautiful. Save them for your scrapbook to remember this day of hope.
I’m a fellow Missoulian and mom of two who enjoys reading your blog off and on. I know you are probably hearing a lot of moms say “I can’t imagine what you are going through”, but I read your words and they strike so close to home. My son was born with a heart defect 15 months ago and there are so many parallels with the feelings I can relate to – rushing to the ER, fast breathing and blue lips, the uncertainty of the diagnosis, the waiting, and in our case being life-flighted to Seattle and going through surgery when our peanut was the same age Ruby is now. Oh, and two bouts with RSV the next winter with intense booger sucking. The strength of these little guys is truly inspiring – I felt like I only had a fraction of the strength I witnessed in my son. I just wanted to let you know it DOES get better and you will be laughing and telling stories about this sometime in the not too distant future.
i smell hope. we are constantly thinking of you. and yes…just amazed at how you are trudging through this and so glad you are documenting it for us…for you…for ruby. i keep looking at that little picture of her in your header…all slumped over in your arms and comfy. can’t wait for you to have that again. i’ll never forget the day lainey was in the hospital…maybe day 10 of our stay when a doctor came in, wrote some notes and just casually said she could be out of her little bed and i could hold her again. she said it so casually and then left the room, having no idea what this meant to me. and that night…holding her again after days of having to have her in her special little bed and thinking it was never going to end…honestly, it’s probably the sweetest, most bonding night of my life with her. i knew it was almost over. your day is coming soon, my friend. love. love. love. lainey knows ruby’s name well now. xoxo
For every person who leaves a comment count on the fact that there are dozens and dozens, like me,sending good healing thoughts your way. I’ve been waiting for your updates like an old friend. Take care of yourself, let the professionals take care of your little one. She will be home again soon soon soon! That’s my wish for you.
Michelle
You’re really going to have some story to tell on this girl’s wedding day.
What a champ.
You’re all five (Jada’s thinking of Alice) in our thoughts.
this post was such a glimpse of the things in your life at present. the snippets of the things in your everyday … the things that you seem to be clinging to the beauty of in the midst of going through this trial.
that day with friends sipping wine and watching the children is so on the way soon. hoping it comes sooner …
thinking of you all.
What a fighter! Glad to hear things are slowly, but surely, starting to look up.
YEAH! I am so relieved to read your words and know MS Ruby is fighting those crazy bugs! Hang in there Nicci and Andy, We love you guys and know you will all be home together before you know it! Our prayers are with you all.
Big Hugs!
Aunt Penne and Uncle Hal,
Phil and Mariah
mama-to-be; Paoli…..
YEAH!!!!!!!!!!!!!! Lil chicken is stronger today, tomorrow just a little stronger and by this weekend she will make even bigger newborn strides!!!! I’m soooooooooooooooooooooooooooooooo happy for you both. I will keep sending my good wishes and prayers westward!
Many hugs to you all, Nici!
Keep Breathing by Ingrid Michaelson – great song!
Nici, your writing is beautiful and your Mama’s love is strong and enduring.
My son spent his first 3 1/2 months in the hospital so I know what it’s like to breathe hospital and to be very scared.
I hope your daughter is returned to her loving family very soon.
With blessings,
Rachel
we’re thinking of you and your family, you have incredible strength!
Well told as always Nici. Glad to hear there’s a light.
Little Ruby has been in my thoughts every day. I’m so glad to hear things are looking up. Please know we are all sending thoughts and wishes to the universe for her and you.
Thinking and hoping the best for your little family. Ruby is a fighter, that is so very clear. And from one nursing mama to another can I just say that I physicaly cringed when I read that you accidentally spille 3 ounces of milk! oye, when you are pumping that is the WORST!
god speed to little ruby.
xo
Another reader here who has been following along and sending love your way. It’s funny, I subscribe to your blog and have different categories for the blogs I read regularly. Yours in under Gardening for some odd reason.
But really don’t you think it’s strangly appropriate? The tending you’re doing to Little Miss Ruby and Margot, and yourselves. And the little sprout of green hope that Ruby is shooting up through the snow. She’s like an early tulip pushing her way upward. Keep up the good loving and watering and feeding of that precious little seedling!
I, too, am a longtime reader and lurker. Can’t not comment on your tremendous will and Ruby’s spirit. It’s not a sprint but a marathon. Pace yourselves and take care of the mama and papa. Glad your mom is there. Keep counting the blessings.
Klein Family,
I remember watching the monitors like a hawk as Caleb lay there covered with tubes under the lights. I perfected the monitoring of the monitors. I also delivered the freshly pumped milk to the NICU fridge labeled and correctly bagged.It kept me mildly busy and was a welcome distraction. We too had to vacate our room before Caleb was well enough to return home. We ended up in the parking lot in an RV so that Amy could go in and nurse him once we got to that stage. I think I can get you guys the hook up on an RV if you need it. Let me know if you want to check it out.
Taj,Amy,Caleb
oh sounds like she’s a feisty one!! Can’t wait to watch her grow. Congrats on turning a corner. peace, -Abbey
Hi Nici,
I’ve been following your blog during this very difficult time, and want you to know I’ve thought about you every day, hoping little Ruby is getting better. I’m glad you have so much love and support to get you through this!
Take care,
Jodi in Minneapolis
Sending blessings of peace and love to your little one and to you and Andy….
Hugs from IDAHO…..
SO glad there is a faint glow of a light from the end of the tunnel.
Still praying, hoping, dreaming and wishing.
What relief that she is getting stronger! Fight, little Ruby! We are still lifting you guys up in prayer and won’t stop. My daughter asks every day if Ruby is home yet and remembers to pray for her, too. You are on my mind, and if that’s not enough, I actually got a jar of peach butter in the mail the other day from 3 states away that someone made using your recipe. It’s so yummy! As I read through this last post, I had a memory that I had forgotten. When my boy was in the NICU and entangled with wires and I couldn’t nurse or hold him, I had the strongest, primal really, sense that if I could just get him HOME he would be fine and I could stop worrying. Even though I knew he needed to be there to keep breathing and healing, it took everything in me to not pull all the medical stuff off of him, tuck him right next to my breast where he belonged, and run like hell to get out of there. He did heal and come home on a monitor. I thought I would be so worried, but I had such peace knowing that is where we all belonged. We are going to do our best to pray you guys all back home where you belong.
im so excited for you to take her home. soon. very soon. xoxo
Christian louboutin disount
cartier watches for sale
immersion watches for sale
cheap skagen watches
replica harry winston
discount De Witt watches
chanel handbags for sale
Bean pendant Tiffany
Christian Louboutin Insectika Black
Christian Louboutin Mary Jane Platform Black
Christian Louboutin Very Prive Suede Platform Peep Toe Pump Black
Christian Louboutin Patent Minibout Zep Pump Black
replica Gucci
replica Hermes
replica Jimmy Choo
replica Jp Tods
replica Juicy Corture
replica Loewe
replica Louis Vuitton
replica Marc Jacob
replica Marni
replica Miu Miu
replica Mulberry
replica Paul Smith
replica Prada
replica Thomas Wylde
I want to create a blogspot of my own and want to earn some money from that. Is possible?. making sure to note which powder is in which bag