Blurry Edges

Several conversations lately have included the topic of dreams. How often do you remember your dreams? Do you dream in color or black and white? And so on.

I mentioned previously how I have clear, vivid dreams most every night. I’ve started paying more attention to other details besides simply what the dream is about. My most recent observation is that it seems the “lens” or eyes through which I dream are blurry around the edges. As if I can see clearly what is right in front of me, but as I move my eyes or attempt to look beyond what is in focus, I don’t see things well.

I think to myself how true this seems about life, especially right now. For the most part, dealing with the moment, the “right then” is about as clear as things get for me. The moment I start looking around, ahead or even in the past, things get fuzzy. I lose clarity.

It seems we have no choice but to be present and live in each moment. There is a part of my personality, a part of “me” that I either lost or let go of that day in late January when we learned about Audrey’s health. I mostly stopped making plans because I truly had no idea what the next day would bring.

And this has continued each and every day sense. It still feels unnatural sometimes. It frustrates me a lot of the time. I want the edges to be clear. I want to easily see what’s around me, what might come next.

This week as Audrey was busy making progress and moving forward. I was not. I found myself stuck in a place of discouragement. I want to know so much more than I do. I want answers to the big questions.

Sometimes I just want to hit fast-forward and get to when life feels more settled…more normal. And then I stop.

“Stop wishing it away”, I hear resounding quietly in my ear. I need to embrace this, right now. For several weeks it still felt like a transition, while now it seems that we need to settle in. Know that the feeling of transition may simply be a new way of life. Prolonged flexibility.

I think of Audrey’s head. The back of it is quite flat from lying on her back for almost three weeks. PT is encouraging the team of nurses to help avoid this by putting her fully on each side for a period of time each day. The therapist assures me that her head is still quite pliable and there shouldn’t be any permanent damage.

Pliable…I need to be more pliable. More easily flexed and bent but not broken. I am certain that I can flex with much less force today than perhaps this time last year. But that doesn’t mean it doesn’t hurt sometimes.

And a couple of days this week it hurt.

I wanted to be in control.

Trusting the bigger plan was exhausting me.

Hunting for the beauty took a seat in the back of the bus.

And what was I left with? Not a whole-heckuva-lot. How quick and easy it was to get off-balance. I felt empty and uncomfortable. I was not so gently reminded of how bad it feels when I even slightly get off course and my faith shakes.

It’s okay to have bad days, I get that. I have zero doubt that there are plenty more of them to come in my lifetime. But the key is being able to move forward, fighting against getting stuck or sinking. Sometimes I tear up and blink away the salty drops before they escape my eyes. Other times I sob and should perhaps rehydrate afterward from the opening of the floodgates. That’s the truth of it. I won’t pretend that these days don’t happen. But thankfully, I am surrounded by family and friends who stick with me. I believe in a forgiving and grace-FULL God who, at my very worst, shows me love and peace.

I woke up today feeling peaceful. My attitude seemed softer and open to whatever the day might bring. We’ve been watching Audrey’s breathing for several days now. She only has her breathing tube, feeding tube and (yay!) a new PICC line. They would attempt to wean her vent support but the blood gas results would force the doctors to go back up. This started to feel discouraging, particularly because she didn’t need as much support prior to her heart surgery…did something happen with it to require a breathing tube long term? Can she fully recover from the trauma of the operation?

We got to the hospital this morning to see that she had maintained proper levels to continue being weaned aggressively over the past 36 hours. They told us they would attempt a trial extubation…EXTUBATION!

We were cautiously optimistic throughout the day. Trying not to get our hopes too high but praying it would work…that she would breathe.

And she did. She IS. It doesn’t feel very good for her though, her throat will be sore and swollen. She attempts to cry but hardly a sound comes out. A sad sight to see, but it is seeing life. Seeing her react to pain seems to be such a good sign. They will watch her closely throughout tonight and there is a possibility we will be moved to the NICU in the next day or so to continue her recovery.

I want to hold this little girl so badly. And this gets us one step closer.

Soon enough, baby girl, we’ll be nose to nose again. Way to go! You are fighting a good, GOOD fight and in your own time, you have wins and victories. I’m proud to be your mama. Thank you for reminding me to keep the faith. To fight with you and for you. You amaze me, precious bunny.

I pray she will not need to be reintubated. That she will be moved to the NICU so her progress can continue as she gets stronger. I pray for patience as her body takes the time it needs to recover so that one day she may come home. I pray also that her heart stays strong and she has more time to grow before her next surgery. And, I pray that she would defy odds against the gremlin in her brain.

Until next time, and as always…

Love and hugs,
R

20140712-182239-66159370.jpg

20140712-182239-66159083.jpg

A Tiny Six-Weeker

Six weeks ago today, she took her first breath of life.

She lived.

She lives.

I think back on all that has happened over the past month and a half and I let out a small chuckle. You might think we would be used to all of this by now, but we’re not. I’m still amazed by how much she has endured…and overcome. No tiny human should have to fight so hard for life, but many do. Every single minute, every single day, there are babies around the world clinging…fighting for life.

I sit at a local Starbucks as I wait to go to a doctor’s appointment of my own. I catch myself watching the people around me, wondering about their lives. I wonder if they have known as much love in their lives as I have in my own.

I smile.

I’m so in love. I sense the overflowing heart Chris has for Cooper, Audrey and I. I watch and feel how many family and friends love both of our children without condition. People we may not even know personally are making Audrey’s story a part of their lives, sharing stories of how she is making an impact.

The good Lord has given me a glimpse into the souls of many, proving to me how good people are. I have much to learn from the selflessness and generosity we have witnessed.

The only way I know to give back to you, each of you who read these words, is to write. To continue to tell the story. Her story.

Sometimes Audrey feels like my own little messenger from God. When I feel broken, I look at her and am filled with love…chin up, Rachel. When I feel full and blessed, I am reminded of the perspective I have been given…be thankful, Rachel. When guilt creeps along and digs in with sharp claws, I hear Him say…you are enough, Rachel. When I get lost in the wonderment of what is to come…be present, Rachel.

Today, almost to the minute, my mom and I said a little “HOORAY!” when she turned six weeks old. We’ve had some great progress over the past couple of days:

  • Both chest tubes have been removed. Chest x-rays are being ordered each morning to watch the progress of her chylothorax. Today, her lungs look a bit “hazy”, but they are watching this closely.
  • Her pacer wires were removed. No longer does she need pacing assistance to her heart.
  • Her arterial line was taken out.
  • They are weaning her off the heavy pain medication/sedative. She is being monitored closely to avoid withdrawals and a different medication is on board to help with this. Typically, they say withdrawals can occur when a child has been on the heavy meds for more than five days…she has been on them for 14 as of today. Thus, her weaning process will be slow and steady.
  • Her TAPVR repair appears to be doing it’s job, a heart echo is done every few days or so to check the status of both the repair and her Tetralogy of Fallot. There is no plan for the TOF surgery, they hope she can be at least four months old, ideally six.

A few prayers and concerns:

  • Her entire life, she’s had some sort of breathing support. Coming off the ventilator is taking a bit more time than perhaps it should. They are attempting a support system called NAVA, but she doesn’t appear to be quite ready for this. We need her lungs to be strong, to breathe well…on her own. This is asking a lot for this little girl. For now, she remains intubated and on full support. Her CO2 levels in the blood gas results have been quite high, these need to come way down so they can wean the vent.
  • Physical Therapy is incredibly important for Audrey. She literally hasn’t had a chance to thrive…only to survive. She’s a six week old baby who can hardly move and weighs less than 6 pounds. Thus, moving her arms and legs for her becomes not just helpful, but imperative.
  • She needs her central line removed and a PICC line placed. As we all know, getting lines placed in this baby’s body has been an issue every single time. Yesterday, they attempted placing a PICC for a couple of hours to no avail. They will try again tomorrow.

Overall, I pray that my baby daughter would start to become more awake and alert, that she would start to move around some, that she would be improve enough to be extubated and perhaps could try a bottle again. I pray she will get to come home and live with us for a little while before we are back here for her second heart surgery. And mostly, I cling to hope that, despite Dandy Walker and the past two weeks of sedation, Audrey will have the opportunity to really live. To see and hear. To talk and laugh. To sit up, crawl and perhaps even walk. I know that is asking for a lot…I get it. But wishin’ and hopin’ and prayin’ seem to do wonders for her. So I will.

Sure, there are many things yet to overcome, plenty to get me feeling like the waves keep crashing and I can’t catch my breath. But we high-five the victories, right?

Because of all the progress that IS being made, we did a little celebrating of our own last night at the Leslie Home.

Audrey Claire officially has a place to sleep! Her perfectly white crib is set up and ready for the weight of a baby…

Come on, baby girl. You may not know life outside the hospital, but it is wonderful. Come and live in it and know the joy that it can bring. I want to introduce you to your dog, Tucker. I want you to feel the warmth of the sun. I want to bathe you in gentle, warm water. I want to stroll you on a walk. I want to rock you to sleep. Maybe some day, we’ll walk hand in hand to watch Daddy and Cooper fish. Or we’ll ride bikes to get ice cream as a family of four. My hopes and dreams for you may sound simple, but precious girl, I know that they are not. As you drift in and out of a sedated sleep, dream sweetly, my love, of the possibilities of life.

Love and hugs,
R

Being a Hunter of Beauty

I sit in a beigey-yellow chair in the dimly lit hospital room. The footrest is elevated and I draw my legs closer. My arms are warmly full of baby Audrey and I can’t seem to get close enough to her. I take her in. Smell her. Kiss the tip of her cold bunny nose…

That was two weeks ago today. 14 days since I was last able to snuggle with my baby.

Today, Chris and I quietly sit back and watch the orchestration of the team caring for Audrey. We watch her chest move up and down and admire the sight of her heart beating strongly just under the railroad track holding her incision closed. Her nurse plays country classics on Pandora for Audrey’s listening pleasure and George Strait’s, “Love Without End, Amen”, plays through the speakers.

Isn’t that the truth? I look at Chris looking at Audrey and think of Cooper all in the same moment and think, yes. Absolutely. My love for them is most certainly without end. Amen. I take a moment to pause and smile. To be thankful. To be a hunter of beauty.

As Audrey has lost more and more fluid, her hands are back to their boney, wrinkly form I remember from her first few weeks of life. I’ve said since the first time I saw those fingers that they remind me of her great-grandfather Derry’s. Something about them gets me every time and I smile. They may not look like a the chubby, banded hands of many six-week-olds, but they are a reminder of the lineage she comes from. She is made up of incredible people from both of Chris and my families.

But her heart is unique. It’s all her own. She fights to keep it going and despite all that has been, is and will be against it, it beats with regularity and strength with no extra help from medication right now.

While we regret the news of yet another diagnosis of her chylothorax, the time she has spent a since then on a very specialized formula has really started to help clear the consistency and decrease the amount of fluid in her chest tube. Really positive. The hope is that this formula will decrease the output of the thoracic duct and allow it a chance to heal because less is interfering with it. Corrective surgery for this is the very last resort and the heart surgeon will go to great lengths to avoid it if possible.

The most important thing is Audrey’s health, absolutely. But I won’t pretend that it doesn’t sting just a little that the milk I’ve been working to provide just isn’t working for her. She was off of the milk for many days after her surgery and then, not long after starting on it did they discover this injury to her duct. As her mama, it feels like one more thing that I cannot do for her, like it was the last thing that made me feel needed…useful…having a purpose. I ached, felt sorry for myself for a bit but then, a lightbulb. As I was hunting for the beauty…anything at all…I realized how wonderful that my milk was being administered, even for just a few days. Because of the high fat content of it, the injury to her duct presented itself. Because she still has that right chest tube, they were able to diagnose it and start treating it early. Thankful for this.

In the midst of all this, physical therapy has come to consult on Audrey. She’s literally been lying on her back in basically the same position for almost two weeks. She’s sedated now and was paralyzed for many days. All of this can be problematic with her muscle tone, ligaments and tendons. She holds her hands, arms and legs in the same position for hours. So between PT and her family, it will be important to do a few specific exercises with her several times each day. Also, the tiniest splints you have ever seen were molded and made just for her. She wears them two hours on, two hours off all day. It is something that seemed a little overwhelming at first but now it feels like something I can really do to help her.

OU Children’s was very quiet over this holiday weekend. I can say that “quiet” word now that the weekend is over. Most people in the health profession cringe at even the mutter of the word. Tomorrow, things will be busier, the hustle and bustle will return again.

A new week begins. What, I dare ask, will it bring? Progress? Yes. More set backs? Perhaps. Whatever it brings, we’ll make it through.

I close with beautiful and thoughtful words from my mama, Audrey’s NayNay:

Hopeful, as always, believing fully in miracles, expecting them to keep coming from our Heavenly Father, God, who is in charge of this little angel.

I must Trust HIM…..it is how I carry on.
It is how I face this, and it is how I stand firmly on the hope that HE promises.

Pray with us, believe with us, trust with us, remain hopeful with us….Audrey’s loving family, her bedside cheerleaders and earthly support team!

We are eternally grateful for the immeasurable concern, caring spirit, encouragement, support and love each of you reading this has provided in this time of need. YOU are “angels among us”.

May blessings fall on each of you & your precious families.

Renee & Rachel

20140706-181346-65626643.jpg

20140706-181346-65626965.jpg

Her Chart Thickens

An update from PawPaw Mark:

The past couple of days has been filled with positive steps of progress: right chest tube and peritoneal catheters were removed by Dr. Burkhart yesterday, her little bladder catheter was removed this morning, most of her heart meds have been stopped and her vitals have been very good. Feedings have been increased and seemingly tolerated well….

and then, another step back, another thorn, another complication has raised it’s ugly head, another wrench in the gut, another fly in the ointment, yet one more blasted diagnosis:

chylothorax

chylowhat? seriously? What the heck is that?

Another “diagnosis” to put on Audrey Bunny’s thickening chart.

Happens in about 2-10 out of a thousand babies who have had thoracic surgery. Apparently a tube called the thoracic duct, that is practically invisible, is damaged at the time of some during thoracic surgery. That duct normally collects and transports large volumes of lymphatic fluid from around the gut and dumps it back into the blood stream for use in the body. It has a lot of important stuff like fluids, lipids, and immune globulins. When it is severed, those fluids and goodies leak into the space between the lung and the chest cavity called the pleural cavity. This is not a good thing. It must be removed. It must heal or be fixed.

They will try to manage this with modifications to her stomach feedings and do more of her nutrition support by IV methods: TPN. Instead of getting that chest tube out in a day or two, now it could be weeks. As much as I hate to type these words, it is possible she could require another surgery! It is possible her little chest would need to be reopened. Those words sent her bedside warriors into a bit of despair, sadness, frustration, anger, you know, words you’ve read here before. How much can baby Audrey take? She has fought so hard and just when she gets close the top of a hill on her valiant climb, a mudslide.

It’s the Fourth of July-Independance Day, a day to gather with friends and family, to remember our countries foundation and the sacrifices and battles fought to birth a new nation. In time families should be grilling Oscar Mayers and sipping cool beverages, having a swim and lighting firecrackers and Roman candles. I remember complaining about the unremarkable fireworks show we viewed last year on the 4th. Looking out the 9th floor of the PICU is not likely to yield a better show in 2014. The petty things I complain about.

Instead, Baby Audrey is now fighting on a new front in her war to gain her own independence from the remaining breathing tubes and drugs and oxygen and cold feedings from a syringe and pressure sores on her little body. Independence from lying on her back for the past 10 days needing to be held, wanting to be swaddled and held like babies should be by a mom and dad. Embraced and rocked by great parents that love her deeply and long to comfort her. Sometimes it’s just more that the human spirit can take. Why dear God? She is so sweet, so precious, so innocent. Please dear God. Please Holy Father. We beg of you Jesus. Please heal baby Audrey. Please rock her for us. Please send angels to sing her sweet lullaby’s.

Spending these countless days and hours here at Children’s provides clear and often painful insight into the sufferings of so many that the world never sees. Congenital anomalies, injuries, near drownings, cancer, childhood illnesses that fill volumes of books. The orchestra works tirelessly day and night, hour after hour, year after year behind shiny facades of big tall buildings even on the 4th of July to do their best to play a sweet tune, to bring harmony to these precious little ones that grace our lives. They sacrifice their family time on these family days because things happen on days like this. Searching for an open restaurant last night leads to a search for one still open, calls to ask “how late do you serve”? Here, as in all of these places we call hospitals, places we love to hate, the answer is: we never close…….

They do all they can to heal the wounds, realign the misaligned, destroy the tumors, comfort the pain, and fight with all their humanly might against the enemy that would take away these precious gifts, steal the joy, rob a childhood, and break a family’s heart. Oh this thing called humanity. The ache in the heart. The flooding of tears. How much can these families take?

Again we are broken and sliding a bit down the hill. A tough but fragile little girl is fighting so hard to make it back. She needs a break. She needs another miracle. She needs new specific prayer that this chylothorax is healed without surgery and does not lead to even more setbacks. That her chest can stay closed as it should be. That her mommy and daddy will be given the strength to withstand the arrows being shot into theirs souls with each new diagnosis. Pray dear warriors, pray if you will. Please stay the course with this young struggling family. We are grateful beyond words for all who are lifting these dears ones up in your prayers. May God bless you for your love and support.

We thank God for the victories He has granted thus far and praise him for her life. God is good and faithful and loves baby Audrey more than we can imagine. We place her in your loving arms again today dear Lord.

PawPaw

The Gifts

It seems that we, as humans, are quite adaptable. Certainly this changes a bit as we get older, more set in our ways. Life happens, whatever it may look like, and we adapt, we absorb, we deal. But not all the time, I suppose. In theory, this would be our innate reaction: fight or flight.

The ability, whether by intention or not, to go into battle with both guns blazin’ or to flee and run for cover.

Admittedly, I seem to do both.

Sometimes I jump into the ring of fire, feeling that flow of adrenaline, ready to take on the world. Other times, it’s as if all the strength in my body is drained and even finding the will to flee is a chore. I simply melt.

This is normal right?

Normal…who determines that definition anyway? Lately, two air quotes accompany the word “normal” when I speak it because I’m not really sure what that is…what it means.

I digress.

My lovely friend, Annie, gifted me with a book recently and notably I have had a little time on my hands to soak in the sentences. It is called “One Thousand Gifts”. While I am not finished with it, I am absolutely moved by it. Challenged and inspired.

The author essentially starts keeping a list. Not a wish list for an upcoming birthday or a bucket list of things to do or places to visit, instead a list of things she is thankful for. Some would call these: blessings. And not a few…ONE THOUSAND. That may not sound like a huge deal until you try it.

This reworking of her brain, of the way she thinks, changes her for good…for the better. She starts seeing the world differently. Not in a slightly-annoying-somewhat-unrealistic-this-won’t-last kind of way, but deep down to her core her sense of gratitude took precedence in her life.

As I read the book, I wonder to myself how often I jump quickly to worst case scenario, glass half empty feelings. Sometimes I may try to trick my mind into thinking I’m just a realistic person who likes to be prepared. But if I am honest with myself, perhaps I am currently wired that way…seeing the negative first. Perhaps I must start my own “list” to really be aware of how much there is to be thankful for.

Today, I tested it out a bit. And now, at the end of this day, I feel better than I have in a while. Did everything go perfectly today? No. Did I bounce around with a toothy grin all day? Nope. But I sure saw things a little softer, in less of a harsh light. Of course I felt all the emotions I have most other days, but it is how I feel tonight that I want more of. More peaceful.

Audrey had another blood transfusion today. Normally, I might worry what that means and need to know exactly what her blood gas numbers were. Not today, I didn’t ask that question because it really doesn’t matter to me. I trust that if she needed blood, she needed blood.

Her surgeon carefully and precisely removed two of her tubes today. Her left chest tube and her PD Catheter. This is a step in the right direction, the fewer tubes, the better. Her right lung continues to have a pneumothorax in the lower area and some build up in the upper area. So, they watch this lung. When it is ready, the tube will be pulled from that side as well. All in due time.

Her arterial line is shot really. She needs a new one and has for at least a couple of days now. The team made a valiant effort to place a new line but, similar to other line placements in her short life, it was unsuccessful. We are awaiting a decision on how they will move forward.

She continues to eliminate fluid and does so hour by hour. She still has about a pound of excess fluid to lose, but she’ll get there.

She’s getting milk continuously every hour through a nasal tube at 5mL every hour.

She remains on the heavy sedatives/pain medication to keep her comfortable. The weaning process at a later time will be just that, a process. But they are trained and prepared for handling withdrawals in infants.

Physical therapy will be evaluating her body tomorrow, Friday. There is a bit of a concern with her arms and wrists and how she is naturally holding them while sedated. She may have to wear splints to help position them better to avoid a shortening of her muscles and a lack of full range of motion.

She does have cycles of activity, she’ll sleep heavily and soundly most of the time but occasionally she’ll be repositioned or something will stir her and she’ll move her little arms and legs, squirm her head and peek open her eyes. It is so good to know she’s in there.

I could go on and on about her status, but overall, an upward trend continues. For this, we are grateful.

The path is long and there is no Google Map to guide us through. We roll with it. Look for the gifts. Adapt. That is good for today. Tomorrow, it starts again. We fight. She fights.

I’m not sure how many sets of eyes will read these words, but one thing I know for sure, each one of you would be a number on my own “one thousand gifts”.

Love and hugs,
R

Isn’t It Ironic?

Today I went back into the archives of my mind. Remembering, reminiscing…I thought back to Cooper’s earliest weeks.  I realized quickly how naively I took much for granted.

How many times was I too preoccupied with getting to the next “chore” instead of taking time to sit and just hold him?  Wishing those days away…”I can’t wait until he this, won’t it be nice when he can that…”  Time went too quickly, he was a baby for such a short time.

Now?  All I have is time. But not the luxury of being Audrey’s “mommy”. Instead I catch myself feeling a bit more like her visitor. Of course I am her mother, nothing can ever change that.  But the little things that make me her mommy simply cannot happen right now.  I have all the time in the world to sit and hold her, study her, feed her…oh the irony of life.

If only I knew then what I know now…sweet perspective.

We learned today that because Audrey has had to be one position for so many days in a row, she has an area on the lower part of the back of her head with some blood loss.  The wound is being treated by physical therapists. When they discovered it, I thought to myself how I wish I could take the pressure off her little head. Wishing I could somehow offer her any kind of relief.

I was quickly reminded of how many family and friends have said those words to us lately, just in a different sense.  “How can I help?”  “How can we relieve some of the pressure you guys are under”  “Any way I can provide some relief?” Thankful for people in our life who know just what we need exactly when we need it.

At almost the very moment I thought this out in my head, I looked up and realized the PICU was getting a new patient. I saw a team of doctors and nurses flood a room just a few doors away from ours.  Then I saw the patient…another teeny baby.

I wonder what this family’s story is, why is this baby here? I wish I could write them a set of instructions and a list of what to expect in the coming days.  I would tell them that nothing in life prepares them for this. No words can adequately describe the roller coaster they are about to ride. But I would tell them that they will learn so much about themselves throughout the process.  Valuable life lessons will be learned that simply cannot be taught. I pray this family can sleep tonight.  That they can allow themselves the opportunity to rest and recover, just like their baby needs to.

Talk about the pot calling the kettle black, eh? We live and learn and pass it on, I suppose. Unable to change the past, challenged to pay it forward.

Overall Audrey is recovering smoothly.  They continue to be aggressive in helping her eliminate fluid.  When she was admitted last Monday, she weighed 2.3kg, today she weighs 3.97kg…basically, she needs a serious diet.  So they are giving her more concentrated fluids and medications, plus they paused the paralytic to allow her to move, or “work out”, and further increase the amount of fluid eliminated.

I have several children who are heavy on my heart right now.  Little ones who are sick or hurting.  It makes me ache, particularly for their parents and families.  I pray for their comfort, healing and that each of their stories would touch someone, would change someone’s life for the better.  I know I have learned something from each of them.  Kids are such fighters and we, as adults, have much to learn from them.

To these children, including my little bunny, I write:

A Fighter’s Lullaby

Life doesn’t look quite like we had hoped,

It’s a little different and we’re learning to cope.

For your life you have learned, it requires a fight,

Don’t give up, little one, living without  you just isn’t right.

Show me your eyes, remind me you’re there,

Breathe deeply, my love, fill your chest with air.

I may not know what is come,

But surely I know the regrets are none.

You’ve changed me for the better, of this I am sure,

Your innocence golden, your heart so pure.

Rest a while with me in the quiet and still,

As your heart beats with rhythm, mine starts to fill.

With you and for you, I cry out to the One,

To wrap His arms ’round you, with you He’s not done.

Come back to me quickly, I need you here,

No matter how long, I’ll wait for you, my baby, my dear.

 

Goodnight, dear warriors.

-R

 

No Longer Undone

Today at 8am, Audrey’s ICU “suite” was turned briefly into a sterile operating room. The team of doctors and nurses came to her instead of risking any one thing to take her back to the OR where her surgery began.

They weren’t able to complete her whole surgery last Tuesday…most of it, yes. But the final step, the completion if you will, was left undone. The closure of her chest cavity.

For days I watched the rhythmic beat of her heart in close harmony with the rise and fall of her chest. This morning, we arrived at the hospital to see her heart once more before the window was closed.

Most parents have never seen their child’s beating heart, but we all feel them. We know them. A piece of our own hearts lives inside our children.

A success it was, the closure of her chest. And as Audrey’s incredible nurse said today, the day was spent getting to know her as a patient again. Learning what medications she needs to be stable, just how much oxygen her lungs require to breathe, and so many other details impossible to remember. Overall, her day was positive and moved in the direction they had hoped.

She will spend the next week or so continuing to recover under critical care and observation. She has several hurdles to overcome before she would be able to move back to the NICU.

Fluid and swelling need to come way down, but she’ll need to be able to stabilize her blood pressure at the same time. This has been a bit of a challenge thus far. Once the fluid is no longer a concern, they can begin the slow and patient process of weaning her from the vent which is breathing completely for her. She has been on heavy pain medication for so many days in a row, once she no longer needs it, they will have to taper quite slowly to keep from shocking her system. They will reduce the paralytic once again and watch her movements carefully. And many, many other pieces of the intricately detailed puzzle.

They weren’t able to use the “hidden” sutures preferred, instead hers are visible and will leave a significant scar. However, down the road a few months when her second open heart surgery takes place, the scarring should be cut away and upon completion of the surgery, her chest closed with a less severe looking scar.

Each day, we hope to see her make improvements, while being realistic that there may be set backs along the way. We must celebrate each victory, large or small, and be patient with her exceptionally weak and stressed body. She seems to be somewhat easily stressed by stimulation such as being moved, chest oscillation, tightening of her blood pressure cuff, etc.

I wonder what all of this feels like to her. How much of it does she actually sense? I’m reminded again of the first week of her life when I wanted so badly to hold her in my arms, here we are again. But while my arms may be empty of Baby Audrey, my heart is full of her. Of Cooper. Of Chris. I am so incredibly thankful that I get to embrace my boys any time I want. I think that sadly I take that for granted so much of the time.

Thank you for choosing to join us in loving thoughts and prayer this morning. Prayers were heard and once again answered. I believe in it, the power of it. This continuance of love and support is a gift you give to Audrey and her family. You follow through and for this we are forever grateful. We’ll need you more, we’ll need you often. We can never repay you, only can we pay it forward.

Thank you for reminding us that we’re not alone.

Sleep sweetly, dear warriors,
R

20140629-222956-80996416.jpg

20140629-222955-80995467.jpg