She’s Due.

Dear Audrey,
Today you are due. June 22, 2014.

It is an amazing journey you have been on in your almost four weeks of life so far, and to think so many babies would have still been in their mommy’s belly until now.

But not you, sweet one. I’m sorry we took you out of the warmth and comfort of the womb but we needed to help you grow, to help you thrive.

You have overcome so much, leaped over hurdles and proved that miracles do exist.

Right now, as I hold your tiny body, all 5 pounds of you, I feel full. Of so much. Mostly peace and appreciation. I want you home so badly it hurts. But I relish in these moments where my only job is to hold you close, watch you breath and feel your heart beat. There is no pressure of laundry here in the NICU, no chores for me to do. It truly is a blessing to have this time just to immerse myself in you…with you.

And as I hold you, in the still and quiet of the hospital walls…my thoughts drift to a family heavy on our hearts today. A little guy, named Shepherd, had a pool accident last night and is literally fighting for his life at this very moment.

And so I pray for him. For his family. Because right now, hope is not a strategy…he needs a miracle, one that I believe comes from prayer, from something…someone bigger than all of us. I believe God hears prayers and grants miracles. This 3-year-old, who some day I hope you will meet and play with, is being lifted up by hundreds just like people have prayed for you, my darling. Now it is our turn. Now we pray for little Shep…

Audrey bunny, I am reminded once again today how precious life is. How short it is. How puzzling it can be. But also how wonderful it is. How blessed we are. Thank you for reminding us of so many lessons.

Grow, little one, eat and breathe. Come home to us. We’re incomplete without you. Defy odds.

“I have heard it said that people come into our lives for a reason, bringing something we must learn and we are led to those who help us grow if we let them…”

You have certainly changed me for good. For always.

We’ll wait for you. Anticipate and celebrate your milestones. And soon enough, little lady, soon enough you will be able to live outside this hospital.

We love you baby Audrey.

Mommy, Daddy & Coop

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Guilt Be Gone

This rainy morning was similar to most weekday mornings around our house. Chris left for work when it is still a bit dark, Cooper comes wobbling into our room rubbing his tired eyes with feet that still seem a bit sleepy.

He asks slowly with a crooked grin, “Mommy…um…how ’bout…donuts for breakfast?”

It is usually donut Friday, but I could hardly resist.

“Well bud, it seems there is something missing from your question…”

He comes close, I kneel down to meet him at his level. He gently squeezes my cheeks between his hands, and chirps, “…Pleeeaasssee?”

I caved.

So we took a sugary field trip to our neighborhood donut shop and proceeded to his little school. Like most mornings, he starts out a bit shy, gives me a quick hug and peck on the lips and is off and running with the other kids.

I walk out of his classroom thinking about the fact that it is summertime. Most kids are out of school on break, home playing, exploring, going to the zoo, swimming at the pool and having play dates at the park.

Here it comes. Wait for it…the ugly thing called guilt rears it’s ugly head.

As a working mom, I have learned to deal with the balance of two lives. Overcoming guilt is a daily process for me. Some days I am confident that my choice to work, to design and be creative and to be needed outside the home, is the best choice for me…

Other days…I wonder, I question…I let guilt get the best of me. These days I have to work extra hard not to let this happen. If I am not at the hospital, guilt. Dropping off Coop at school instead of taking him to the park or to the zoo, guilt.

After all that, I’m drained of energy. And this isn’t fair to either kid…and especially not my first love, my forever boyfriend, who I still love to date…my darling husband.

Guilt is such a bad habit of mine. Anyone else? It’s silly really. This kind of guilt doesn’t do me any good, rather it takes me down a path I would otherwise avoid.

So again, pivot. How wonderful is it that Cooper has a place where he is loved and cared for, where he continues to learn and grow his intelligent brain and spend time with kids his age? And Audrey? When I am not with her, likely a grandparent is and if not, I know how well cared for she is by the team at the hospital. They love and adore her.

I am grateful to be in a profession I love that helps me feel balanced and fulfilled. Better than that? I have a husband who supports whatever decision I make about working. I know what my “job” is at this moment. I am focused on my family first and foremost. But I do look forward to the day I will be able to get back to doing some work that makes me feel confident and needed.

Warranted advice comes to me from a vast array of perspectives. I enjoy hearing what different mothers and fathers in my life have to say about balance. I take a little piece of each of these conversations and apply it to my own life. I have been on a 30 year course of discovery and frankly, I hope it continues for years and years. I remember my wise Aunt Cathy quoting in a training session once, “When you’re done learning, you’re done.” Amen. I never want to stop learning, growing, bettering and strengthening this wonderful thing called life.

My how I have changed this year. There is no question about that. I have had moments that felt like I was the worst version of myself and yet, I feel even more loved than ever. I am certain I am not alone here.

Remember a few days ago, I asked specifically for prayers regarding Audrey’s feedings? Your prayers have been heard, listened to and acted upon.

She eats. Well. That is, when she is awake.

I’ll put this into perspective for you to help you really understand what I mean. Early last week, she was getting about 1-2% or so of her milk through bottles. The early part if this week, she was averaging over half of her feedings through the bottle!

We have learned that it takes very little wear this girl out. Today she slipped back into an eyes-wide-shut state, sleepy, lethargic and uninterested in bottles. The doctor said she really needs to rest and we need not push her. If the interest level isn’t enough, we will leave her be. This can feel a bit frustrating, two steps forward then one step back. But the team of nurses and doctors assure us that this roller coaster is fairly normal and especially with Audrey’s heart condition, she will tire easily until she can have surgery.

In spite of a slow day, miraculous things are happening in this little lady’s life. How can I even think of questioning how or why? My trust and faith continues to be strengthened each and every time these answered prayers come along. And when they don’t, or perhaps not on my timeline, I am reminded to be patient, to trust and to refocus. It’s as if I can feel myself getting “off balance” and must intentionally swing back to center.

Ready for something else? We were informed today that, despite concerns during pregnancy and even in the early days of Audrey’s life, she does indeed have a corpus callosum. This is a part of the brain that facilitates communication between the two hemispheres…a key player to say the least.

This is a big deal and we are thrilled! Because she already has Dandy Walker to deal with, the absence of the corpus callosum would have likely made seizures worse and disabilities more severe.

My goodness, I’m a thankful mama. Thank you so much for staying connected and fervent in your thoughts and your prayers.

We continue this current way of life between the hospital and our home. We’re stretched thin and quite tired. We have just enough strength to make it through each day and crash each night, resting and recovering before starting over again.

So now, we sleep. Shut down our minds and prepare for what tomorrow may bring.

My thoughts instantly drift to Audrey, guessing what she is doing at this very moment.

Good night my sweet baby. My love for you runs deep, my hopes for you are vast and the need for you in my arms is great. Soon enough, little bunny, we’ll be together under one roof. Soon enough. Take your time. Rest. Grow. Know that you are loved. May only the sweetest of dreams dance in your mind tonight. I’ll be seeing you…

Good night.

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The Dance.

“Mommy?” Cooper asks, each word dripping with wonderment, “Do you think Audrey will come live at our house?”

My mind rewinds to the day we learned of Audrey’s health concerns. The day our world shifted.

When Chris and I returned home from our appointment with Dr. Stanley that day in late January, I recall going into the room we had intended to be hers. A small collection of things we had gathered since finding out she was a girl were neatly placed along one wall. I laid on the bed and wept. Mourning so many things…fearing the unknown…dealing with the pressure of “a decision”. Chris came in, comforted me not with words but simply by being near me and letting me sob.

Fast forward to present day. Our baby is living and breathing here on Earth.

She is growing and finding her own way into the hearts of many.

So, it is time. Time to pull the trigger…to bite the bullet…we purchased a crib, we’ll fill dresser drawers…it is time to create a nursery for little baby Audrey. Something that for so long we were unsure we would need. Something that felt like a giant elephant in a undersized room. On Sunday, my parents helped us move our guest room furniture to clear space for this teensy girl. At one point, my mom and I shared a perfect moment in true amazement that we are getting to do it. That this baby, in God we trust, will make it home and by-golly, she’s going to have a place of her own! While we still aren’t sure when, we choose to believe it will.

So in answer to his question, I responded with a confident and hopeful, “She will, buddy. She just needs to get a little bigger and stronger still.”

And is she ever! Little sis is up to 4lbs. 12.5oz. Her feedings are 40mL every three hours, this is a little over an ounce. Her temperature has been stable and she is officially in a hospital crib. They still keep her clothed in two onesies and 2-3 blankets, but it works. She had her MRI on Saturday. They had to give her two doses of the sedative so she was quite lethargic that day and even into Sunday. The results came back. Luckily there were no new findings, and it confirmed Dandy Walker with no current sign of hydrocephalus. We praise that this is the case and pray that perhaps she won’t develop that dreadful excess of fluid which causes more severe side effects and could require a shunt to be placed in her brain. Only time will tell, but no need right now. Many things to be thankful for, absolutely!

Right now there are a couple of main hurdles Audrey needs to overcome before they will consider discharging her. For one, she is still on oxygen. Thankfully, her flow is very low. At the same time, she is learning how to bottle feed. For her, taking a bottle requires a lot and is an energy drain. She has to work hard and, coupled with her heart condition and how hard her body is working because of it, we’re told it is a fine line between what is just enough versus too little oxygen. Certainly when she has more she has energy and is more alert…bottles are more easily taken. As they wean the oxygen down, she appears to re-enter her very sedated and lethargic state in which she eats very little in her own.

It’s a dance.

As I have said before, she cannot go home until she is eating completely from the bottle and no longer requires a feeding tube. Currently, she still takes most of her milk through this tube snaking from her nostril to her stomach. But a few times in the past week she has taken a full bottle and we all do a little happy dance!

I pray she will do both well. Eat well. Breathe well. All on her very own. Coming home on oxygen and monitors is possible and happens often with NICU babies, I am just going to pray she won’t need to. Join me, will you?

I look at my daughter and simply can’t get enough of her. She’ll lie in that little crib and my heart almost explodes at the sight of her…her scent…her buttery soft skin. When Cooper talks to her or rubs her little head I feel completely overwhelmed and head over heels in love.

I have zero regret. I look at her and think about the fact that so many babies with her diagnosis wouldn’t have had the chance to live and breathe. It appears there is still little research on Dandy Walker because many do not choose life for their babies once the diagnosis is made. Not that this is the easier route by any means. I do not intend to lessen the situation she is in now or in her…well, our…future. But how can I look at her and not fully believe she isn’t absolutely meant to be here? That the best choice was made? She deserved this chance at life and has fought a good, good fight. And we’re here to fight with her and for her.

To me she represents so many things.

Particularly hope and grace.

She’s three weeks old today. Three weeks. Wow. In some ways it feels like it’s been months, in other ways it has flown. NICU life isn’t easy but I am blessed sweetly with perspective. The many families who have spent months of this are superheroes. When the day comes that Audrey may come home, I wonder what that transition may be like…notice I didn’t say worry.

I worry a little bit less these days and really work on going with the flow. The only plan I keep is life in three hour shifts to provide milk…that liquid gold…to our little bunny. But I do wonder. What will it be like for Cooper? How will Audrey adjust? I am incredibly thankful that I have had the time to really recover from surgery. Most mamas come home and are recovering WHILE caring for their newborn. For this, I am grateful.

My gratitude is endless. For so many things, to so many people. Notes, gifts, messages and meals have come from near and far. We are humbled. Full of gratitude. You are Audrey’s army of warriors. All that you do makes a difference in her life…in our lives.

Each and every comment you make on these posts are read and cherished. Someday, perhaps I will print this all out, including your words and give one to Audrey and one to Cooper. This is their life after all. So know that you are a part of the story…we all make up the thread that weaves the quilt of their lives.

Until next time…

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Out Loud

Sometimes when she cries, which really sounds more like a baby bird squawking, I hurt.

Not so much an emotional pain, but a real ache I can feel deep in my bones. I wonder if she is in any pain. Does the back of her head ever hurt? Can she feel the hole in her heart?

Probably not. Thank the good Lord. But even the wonderment of Audrey being in pain brings a wince across my face and a twinge in my own able body.

The hospital has informed us of SoonerStart. This is a non-profit Early Intervention program for children up to 36 months of age with special needs and disabilities. The hospital recommended we get started in the enrollment process.

Chris did a bit of research to determine how to get started and who to contact, forwarded me the info and asked that I give them a call. That was on Monday.

I didn’t make the call that day. Nor did I on Tuesday.

Finally, Wednesday morning, I found the strength to dial the number. As it rang there was a part of me that wanted to hang up and run. “Perhaps I’ll do it tomorrow”, I thought to myself…

But I didn’t. It went through and a lovely woman picked up and helped me get started.

I said it. Out loud. Admitted to this woman that we have a baby with a brain defect. A little girl who will likely need these intervention services from an early start.

I didn’t know this would be so hard until it was. Sometimes I still don’t want to believe it is true. I want medicine to be wrong this time. I want to scream, “Why her?”

But I try not to stay there…in that thought. The truth is, it is her. It isn’t all of her, by any stretch, but it is part of her. And really, it is now part of me, of Chris, of Cooper, of our families, of our friends. Of each person who takes the time to read these very words.

And yet, no matter her “diagnosis”, she is loved dearly and deeply. Of this I am most certain.

When Cooper looks at her, he doesn’t seem to see anything but a baby girl who is very sleepy and wonders, “When is she coming to our house?” While he may not remember this time in his life, I hope that some day he will go back and read this. While so much of it is about Audrey and her life, her story isn’t complete without Cooper. Her health and what it may bring will change what Cooper’s life looks like – but I choose to believe that it is and will be for the better. That he’ll learn from her the way we all already have. That he’ll love her the way Jesus loves, without condition, with patience, with kindness.

Today, Saturday, Audrey bunny will be taken for the MRI of her head. She’ll be given a sedative and placed on a cold metal table for about 30 minutes while a machine takes intricate images of the inner-workings of her brain. We have been told not to expect results until next week, during regular business hours.

What this means is that doctors will be able to properly evaluate what is currently showing regarding the cyst in the back of her brain as well as the outlook for hydrocephalus. It isn’t going to tell us things like what particular physical or developmental disabilities she may have, it tells them what is happening right now inside that teensy head of hers.

We are so thankful she is having this MRI because this also means…she’s out of her glass house and in a hospital crib! She’s still fresh out so her temperature is being monitored very regularly and she is wrapped in two onesies, a sleep sack, a blanket and a hat…in the middle of June!

It sure is nice to be able to pick her up whenever we want. Her little body is tucked in so far beneath all this cloth, it feels somewhat like picking up a burrito of sorts. It also makes changing her diaper so much easier than the small-ish arm holes of the isolette.

Yesterday, they decided to make a change with her oxygen. It is a trick they have used many times before when babies seem a bit stuck and have stats that are inconsistent. They turned her up to 100% to give her a burst of energy. They will then wean down from there. The hope with this method is to kick-start her essentially.

I am happy to report that yesterday, we saw more of her eyes than ever before and she took part of a bottle at four different feedings. This is a big deal. Yes, she has a way to go, but she literally is having to learn how to do this. Most babies are born with this capability, she is learning it along the way. This requires patience, consistency and determination. It is also an energy drain and calorie burn for Audrey, so they determine the best times to have her try.

Because of the sedative they must give her for the MRI, we have been told to expect her to be lethargic again and not to eat much from the bottle but that it should wear off.

Some babies go home from the hospital on oxygen and monitors. We’re not sure yet if this is the case for Audrey. But they have told us what will keep her there is her ability to get nourishment not from a feeding tube. Right now there have been no conversations of when home might be a possibility. We are not pushing them for an answer and we do not want them to push or rush her in anyway.

Warriors, do you see it? Feel it? Your thoughts and your prayers work in miraculous ways. Ready for the next round?

Pray that Audrey will hang on to her knowledge after each feeding and get a little better and stronger at it each day. Pray that this oxygen “trick” will allow her to breathe on her very own. Pray that the MRI would be successful in allowing the team of physicians to adequately evaluate her brain and give us as much information about her. Pray for Chris and I as we attempt to make it through each day, balancing our two children yet finding time to be us. And finally, but most importantly, praise. Praise for the big and small miracles that Audrey has already been blessed with…that we have been blessed with.

We are grateful for so much. We mourn the “should have beens”. We are humbled by His grace. We can feel strapped by fear of the unknown.

It’s a roller coaster, every day. So many of you know this feeling in your own lives, with your own families. I pray that your peaks be many and your valleys few…but existent. I do not wish pain or sadness on anyone, but I have to believe that during the hardest times of our lives, we all come to a realization of sorts. For me, it is a reminder that I cannot do this alone. I have to keep the faith. I won’t survive if I don’t. Choosing to trust in God is how I sleep at night. How I leave that hospital. I pray that in your valleys, you cling to hope. That you fight, the way you have helped remind us to fight for her, for our family.

In the still of the wee morning hours that I type these words, it is feeding time in Audrey’s room. A nurse will skillfully and carefully take her temperature, change her tiny diaper and hopefully talk sweetly to her as she drifts in and out of sleep. They take the night shift for now. But like many things, this is temporary. One of these days, Audrey will whimper and it will be my job to care for her.

This both thrills me and terrifies me. She’ll be home and will finally feel like ours! But…she’ll be home. The angels we call nurses will no longer be at her bedside, the doctors won’t read her stats each and every day…she’ll be home. Again, this is where my trust will be tested but I must choose to do it…to lean in.

Remind me of this then, will you? When I start living in fear again…slipping…falling away from “center” with my eyes fixed on Him…remind me to trust, okay?

As a click send on this, I hope is finds your inbox as you sleep, rest and rejuvenate. It is Saturday, use it well and make the most of it!

Love and hugs,
R

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A Four Letter Word

How often are you asked, “How are you?”

How often do you ask that question?

I would imagine one of the most commonly used descriptions of how one is doing is fine.

Agree?

It isn’t necessarily good or bad, it just…is. Or so I used to think.

Chris and I had a date with our daughter at the hospital this evening while Cooper went to a baseball game with friends. As we were wrapping up our precious time with little Bunny-roo, Trisha walked in. The timing was perfect. She stopped by our room to say hello and to check on things with the Leslie quad.

She asked me that question…those four little words, “How are you doing?”

Can you guess what I responded with? Yep, that four-letter-I-don’t-really-know-how-I-feel word: Fine.

I figured she would smile and move on. But already she knows me better than that.

“Hmm,” she said with a half smile, “Could you be Frustrated, Insecure, Neurotic and Emotional?”

Um, yes. I’d say that about sums it up a lot of the time.

Frustrated? Absolutely. I am frustrated with how little we still know about our precious baby girl and her health. I’m frustrated that she is having trouble taking a bottle. I could go on, but I want to avoid an unnecessary laundry list entitled “Woe is Me.”

Insecure? Sure. I’m no good at this. I already feel like I have failed 100 times in the past two weeks. If I thought parenting was tough before, it’s a whole new ball game now.

Neurotic? If I’m being completely open, honest and raw, the answer here is yes. Have you ever looked up the definition of neurosis? Overly sensitive, tense and anxious. Ask my shoulders if I am tense. And anxious? Let us all recall the time Cooper had to remind me to take a deep breath.

And finally…emotional. Uh-huh. Darn those hormones, they won’t leave me alone. Coupled with a teensy bit of stress and a sprinkle of exhaustion and I’d say emotional fits.

So, my answer to Trisha seems about right on par.

As I drove home, leaving our baby girl behind, I thought about being fine. For today, it’s okay to be fine. It’s true. It’s honest.

But in the midst of being fine, I have a heart that is, said a wise woman to me, “so full it is heavy.”

A heavy heart, I’m learning, doesn’t always imply hard or sad. A heart can be full of many, many emotions. Including happiness, gratitude and humility.

So I pivot my position. With intention.

This week, Audrey bunny has had a graduation of sorts. She has moved to
a different wing within the NICU. An area for babies who are on the path to becoming stable and closer to going home. We are still not sure how long she’ll be in the hospital, but this move is very positive. They are single rooms, so we have a private suite, or so we call it, in the NICU. For a moment, this made me feel a bit, well…fine. I wondered if she gets enough attention when we aren’t there since she requires less hands-on care. I wondered if she gets lonely or if she is heard when her weak cry lets out.

Stop. Pivot. She needs LESS hands on care. This is incredible! She is still on the nasal cannula needing some breathing support, but much, much less. She is digesting her food very well at each feeding and has made it to the goal maximum. She is inching closer and closer each day to being in a crib.

So many praises for where she is today. Here I take pause to be thankful. Your prayers are absolutely working.

The ophthalmologist came yesterday to do a very quick, 10-second analysis on Audrey’s eyes. He said they have the proper structure needed to see but he cannot tell us if neurologically her brain receives the message and she actually can see. We’ll see him at 3 months of age.

While she is digesting her food well, she needs to learn how to bottle feed. She remains in a very lethargic state, groggy, rarely opens her little eyes. She seems uninterested in the bottle. Tomorrow we hope to see the occupational therapist to evaluate what may be the culprit. Most babies come into the world knowing how to do this. Audrey is just having a little bit of trouble and is taking her sweet time. She’ll get there…she will.

A few have asked about her heart surgery. We have not yet met with the cardiologist. This will likely take place after she is discharged. We’re unsure any details regarding when it will take place and what recovery looks like. Count on us to keep you posted just as soon as we know more.

Regarding her brain, we still are waiting for her to be more stable before the MRI can take place. We know it will happen prior to leaving the hospital, we will then meet with a neurologist regularly.

We have not received the results from the microarray genetic test. These typically take a few weeks so perhaps next week we may know something.

I can tell you one thing for sure…she grins. She smiles. Big, gummy, beautiful smiles. She’s deep asleep but when we tickle her little chin or under her sweet lower lip, the most precious grin sweeps across her face and plants itself right in my heart. Her big brother did this all the time as a newborn. We have many photos capturing these moments. Such a gift.

Pray for her to take a bottle. To wake up, be alert and do well with a bottle. Pray that her temperature would regulate and stay above 98 degrees. We need her to breath better on her own. This comes, like most things with Audrey girl, with a lot of patience and a bit of time. These are some things that need to happen for her to be ready to come home. I know we don’t have to ask you twice, your thoughts and prayers are heard and God blesses this baby girl each and every day.

As I lay my head to fall into a sweet sleep, I yearn for my baby. A lump in my throat grows uncomfortably big as I fight to the death to keep tears from falling or a sob to escape. Night time doesn’t get easier. I dread pumping in the middle-of-the-night when the house is silent, the hour is late (or very early) and I wonder what Audrey is doing at that very moment. A moment I should be cradling her. A moment we should be sharing together, instead it feels like we are a world apart. I look forward to the day when our little family is whole. When we sleep under the same roof.

We’ll get there. This is a moment in time. This particular part of our story is temporary, but our love for our incredible children is not. It is forever. It is a lifetime and beyond.

I wish I could know what each of you needs right now. As you pray and think of our little one, how can I do so in return for you and the happenings in your life?

If nothing else, I pray that each of you, family and friends, would be blessed for your selflessness in reading this and supporting Audrey through prayer. That you would know how your love is impacting our family every day. That in some small way, Audrey’s story would play a role in yours.

I wish you could smell her sweet breath, or know the sound of her tiny sneeze, or experience the joy of watching her smile. Instead, see things like these in your babies, kids and loved ones and take a moment to cherish them.

Rest well and know you are appreciated.

Love and hugs,
R

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Mirror Mirror

I wake to a drizzling rain dancing down my window and a groggy little boy by my bedside reminding me of a promise to get donuts before school.

As my eyes adjusted to the light, I realized I slept straight through a date with the pump which should have taken place around 4am. Needless to say, it was time. The thunderstorm that rolled through earlier that morning had caused a power surge in our home. Some lights worked but others weren’t working. Chris had already left for work so it was up to Cooper and I to figure out the apparent electrical issue. I checked the breaker box and everything appeared normal…at least to my untrained eye.

It is moments like these I realize just how much I depend on Chris. I need him, and I wouldn’t have it any other way.

By this point, I was convinced I could feed a slew of newborns and went to grab the pump. I plugged it in and nothing. Okay, no big deal…went to another. Still, not working. After walking around the house, carrying the pump with a trailing Cooper just behind, I had checked nearly every outlet possible with no luck. Each time I got more and more frustrated and Cooper could tell.

Finally, I just gave up. Convinced I would literally burst and would deal with that hurdle as it might come. After an exaggerated sigh, Cooper looked up at me and said, “Mommy, on Daniel Tiger’s Neighborhood, I learned when I get frustrated to count to 1-2-3-4. Can you do that, Mommy? Can you count to four?”

So I did. “1-2-3-4…”

Pleased, Cooper says, “And then you go like this…” He inhales a giant breath deep into his chest and lets it all out.

Once again, this little boy reminded me of such a good lesson. Relax and breathe.

Audrey is 38 weeks today, but 12 days old. The range of emotions I have felt over these past 12 days is vast. Even more than what I felt while still carrying her in my belly. I have felt some incredible highs and some deep lows. A couple of nights ago it seems I quite literally hit a wall. I didn’t even realize how tired I was. Or how a sense of complete overwhelm can make me feel so out of control. I didn’t recognize myself. Where did my strength go? It felt like looking in the mirror was a changed person, a person I wasn’t familiar with.

The help we have received, the generosity we have been blessed with, all of it is incredible. I understand that in life, we are all givers and takers at different times. Lately , I feel like the taker of all things. I want to give back, show appreciation, pay it forward.

Then, I stop. I breathe. I am reminded that this help is something I should say thank you for and move forward. Help, in every sense of the word, is probably going to be something I will have to learn to accept from now on. Audrey will need help in ways we cannot provide. The idea of being able to do it all is something I need to let go of.

That is a hard reality for me.

Luckily, my husband, my family and my friends love me anyway. In those moments when I have used up my strength and my happy is wearing thin, I have people who stick around even still. When I deserve it the very least. When I say, “Mirror, mirror…” and feel the least fairest of all, I know that I’m still loved. God’s good grace shines through the people in our lives and I am reminded, once again, to lean on Him. I am not in control.

Audrey bunny has made incredible strides since the last update. She was stuck on a proverbial plateau, yet since then she has moved forward and started rolling down the other side. She has been weaned off the vent, then to CPAP and now to a high flow nasal cannula. Her temperature is starting to self regulate, which would get her closer to being out of the “glass house” and into a hospital crib. Her PICC line has been removed and her feedings are up to 35mL every three hours. Yesterday, she and God seemed to have made a deal and she showed me her eyes. For probably two minutes, she worked her little heart out and seemed to look around and a couple of times appeared to look straight into my eyes…but it felt like she could see all the way into my very soul. I was alone with her, holding her little body, stroking the soft hair on the back of her head…right where the cyst resides. She just…opened her eyes. She woke up. For those two minutes I felt like she knew she was giving me a gift. I needed it badly that day.

Here is a snippet of this perfect moment.

This morning, Chris and I spent the morning hours alone with our daughter. We got the update on her stats. We cuddled with her and loved her. An amazing moment was when the nurse said she has been given orders to try bottle feedings up to three times each day depending on Audrey’s status and interest. We were here for the very first try! I got to hold her as this moment took place. It took a lot for her to try but she did, and of her 35mL, she took in 5mL. A success I would say. She still has her feeding tube in, so the remaining milk went through it.

Like I said, amazing progress. She still has some hurdles to overcome before she would be discharged, but she will get there in her own good time. No one is pushing or rushing her.

As I have said before and will do so again, thank you for your continued love, support and most of all prayers. You are warriors. Truly. You may not see her in person but know that she feels the benefit of your love.

Love and hugs dear family and friends,
R

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