As long as you are with me…

Dear Audrey,

There has been great progress over the past week. You’ve had some setbacks along the way, but like everything else, you have fought. While your gastrostomy surgery to place the Mic-Key button went smoothly, it took you a little longer to recover than expected. Slow and steady…at your own pace. You are feeding well through the tube. You aren’t gaining weight yet, but you will. You must.

This morning, you threw me for a loop. During a diaper change, I noticed your Mic-Key button was loose. I didn’t think too much of it, but made mental note to ask the nurse about it when she returned. So I snuggled you up in your onesie and soft blanket, scooped you up to hold you. Almost instantly, I noticed your onesie was drenched. I sat you back on the bed, unbuttoned the snaps only to find your Mic-Key button had fallen out completely.The Button Fails

I felt nervous but calm. I went to get your nurse to help me. The water-filled balloon that is in your belly to keep the button in place had ruptured. The reason is unknown. I learned that from time to time this might happen. It scared me a bit at first, but quickly I realized what a blessing it was that it happened for the first time at the hospital. Next time, I won’t be so caught off guard by it.

Tomorrow, you are scheduled to move to a new room. Your room will be in the NICU Village, this is a place where babies go who are almost ready to go home. Mommy and Daddy will provide all of your care just like we will at home. We will eat, sleep and be there for a few days until the team of doctors and nurses feel that as a family, we are ready to go home.

Can you imagine it, baby? A car ride, your own bed, your own brother, your own…everything.

Audrey, you’ll get to feel the outside air, the warmth of sunshine, the scent of food, the sound of Tucker’s bark and so much more. Please, keep progressing so this can happen and soon. Let us take you home for a bit before they must, once again, hold your heart in their hands. They say babies thrive once they are home…do that, okay? Prove the doctors right, prove that you are strong and stable enough to do this.

This transition might be hard at first, but we’ll all grow into it…our new normal, as Daddy calls it.

Let’s create a life together outside the walls of this hospital. Sure, there will be challenges and some inconveniences.  But there will also be great victories and precious moments not taken for granted. Life is short and uncertain. Our days are not guaranteed, they are a gift. I want to treat them as the gift they are. You, Cooper and Daddy are the beautiful ribbon adorning each day…

I recently heard a song and within the first few lines, it captured me. It made me think of you. I listened to it as if it was from your perspective…as if you were the author:

“We’re a thousand miles from comfort, we have traveled land and sea
But as long as you are with me, there’s no place I’d rather be
I would wait forever, exalted in the scene
As long as I am with you, my heart continues to beat…”

You are so loved, baby girl. You are loved wholly and well. And I know you feel it. You feel the love around you. Just as your loved ones haven’t given up on you, you too have never given up on us. I believe you want to be with all of us, here on this beautiful Earth, surrounded by golden-hearted people.

Well, we’re here for you. We have been and will continue to be. As a team of warriors, we’ve been through much and will encounter more throughout your life.

I love you.

Hugs,

Mommy

A Little Smirk

 

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In Recovery

Thank you all for your thoughts, prayers and special messages. Audrey is out of surgery for her g-tube placement.

They did have to go in through an “open” incision as opposed to doing it laparoscopically. She has a new scar running down the middle of her little body. Next to that, she now has what is called a Mic-Key button. This is where her feeding tube will attach. They will do her first feeding using the button tomorrow morning.

She is in a great deal of pain right now but the team is working on helping her settle down a bit.

Again, thank you. More updates to come in the coming days.

Love & hugs,
R

Week In…Week Out?

Remember that time I said I’m not “particularly suspicious”? Ha, well…perhaps I am, just a tad. That, or I failed at trusting.

Not even a full 48 hours after I reported the news of Audrey’s success in breathing on her own last week, she was back on oxygen. She had a stressful bottle-feed attempt and simply could not recover on her own. Since then, she has been getting support.

Last Friday, the morning started with a conversation about when a g-tube surgery would take place. The day ended with discouraging news from a heart echo. Her cardiologist believed that the pulmonary veins that were operated on in June may be “re-stenosing”, or becoming obstructed. This was concerning enough to require Audrey to have a procedure this past Monday, it was a Heart Catheter to run dye through her heart and lungs and see more clearly what is happening inside her little body.

After the procedure, the cardiologist felt that Audrey would probably need her total heart repair surgery within the next week or two.

What?!? I thought we had a few months?

After her heart surgeon had a chance to study the results from the Heart Catheter procedure, he disagreed. He felt that although one of her four pulmonary veins has become completely obstructed, her body is compensating well enough.

Enough to give her time. Time to continue recovering from her first surgery. Time to grow and gain strength to make it through the next. He feels strongly that the longer she can go without the surgery, the better her outcome and success of the total repair.

So…tomorrow morning, Audrey will go to surgery for her g-tube placement. Barring any complications with the surgery, recovery or overall condition clinically, we are moving down the path to taking Audrey home.

That’s right…HOME.

I’ve wanted this for over 10 weeks…well, really, ever since the day we found out she was sick. A place we can be a family of four under one roof. A place where a room awaits her. A place that we will continue to create memories. A place where an almost-four-year-old is ready to practice his role as a big brother.

I’m overjoyed at even the thought of it…and, gulp…terrified.

There are several hoops to jump through between now and then. Surgery, recovery, getting back to full feeds, control of her acid reflux, a one-hour car seat test and the education of having a baby at home on oxygen, a feeding tube and a heart rate/SPO2 monitor.

All of this can happen. I believe it will. Superstitions are sort of an excuse not to trust in what’s next. There was a reason Audrey wasn’t taking a bottle, a reason why she needed more oxygen. She has only 3 of the 4 pulmonary veins she needs. And now we know this. Not because I jinxed her, but because she was clear in her needs. We know that, at least for now, Audrey needs some breathing support. She needs help getting her nutrition. She simply needs these things while her heart is still broken. The hope is that after her total heart repair, she’ll have the opportunity to thrive instead of simply survive.

I have great trust in medicine. I’ve seen it work. I’ve also seen medicine be no match for the human body. That is why I believe in something bigger. I cannot rely on medicine alone, because at the end of the day medicine is really a series of highly educated guesses…at some point, my faith in humans only goes so far. It is when I give up the need for control and instead choose to trust in God that I can truly feel at peace.

And I do, I trust that the life Audrey is living has great purpose. That her strength in the darkest of hours may bring hope to others in their time of need.

It wasn’t that long ago when I thought going home with a feeding tube and on oxygen might be too hard to bear. My perspective has changed. I’ve pivoted and I am thankful that, with the help of some equipment and HomeHealth reps and nurses, the chance for Audrey to come home is imminent.

Seeking the gifts, right? Watch for them, they are there. They are real.

I know I don’t even have to ask for you to keep lil’ sis in your thoughts and prayers during surgery tomorrow. As we make progress toward going home, I will keep you informed. I really have no idea when that might be. It could be as early as next week or perhaps by the end of the month. Either way, we’re working on it. Our little Cooper will have a real chance to be a big brother. Oh my, I’m certainly interested to see how it goes. Things are about to get real busy!

Love & Hugs,

R

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Seeing Beyond the Doubt

Sometimes I am afraid to type the words. Each keystroke feels like a gamble…like a toss of the dice. I’m not particularly superstitious, but something about not only allowing myself to believe it is true, but then sharing the news with others makes me wonder if I might jinx it…

She’s breathing.

On.

Her.

Own.

In this moment, at this very second, she has no help…she’s doing it all by herself. For the first time since her birth day nine weeks ago today…every breath she takes is unsupported.

Sure, an ambu bag stands waiting in the wings, offering constant warning with it’s white noise effect of a steady rush of oxygen…but that’s just in case. She had a trial on Sunday with no support and it proved to be a bit too much for her. However, as of 3am today, Tuesday, she has been taking breaths with no nasal cannula.

We’re cautiously optimistic.

Clinically, Audrey Claire is doing well. Yes, her heart still requires a serious repair. We’ll get there, but she must grow. She’s about 6 1/2 pounds right now. Small..too small. But, she won’t take a bottle. We’ve heard several theories and opinions of why she may not be taking one, including:

1. She has oral aversion. Too much time being intubated with the addition of overall negative oral experiences (i.e. having her mouth cleaned, or her throat suctioned)

2. She is too weak. Her body has a high metabolic rate causing her to burn calories very quickly.

3. She is protecting her airway. Her body is telling her to breathe instead of swallow.

4. She is out of practice. She hasn’t had the opportunity or the desire to suck, swallow, breathe in a very long time.

5. She has been experiencing severe acid reflux which is painful and hard to recover from.

Take your pick because it could be any of the aforementioned reasons, or perhaps a combination of them all.

Eating…such a simple thing it seems. We’re born with the knowledge and desire to do so. Well, most of us. For Audrey, eating has been less important because her body is trying to survive other issues. Speech therapy has been working with and evaluating her for a week now. The team will give Audrey one more week. One week to show an interest…or rather, an ability to take a bottle. Should she make no progress, they may be forced to place a gastrostomy tube, otherwise known as a “g-tube”.

I have dreaded this possibility for what seems like Audrey’s entire life. I don’t want that for her…but really, I don’t want any of this for her. I know better though. I know a g-tube would allow her to get the calories she needs to grow, to get stronger to allow her heart to be repaired. They want to get her home…they believe babies thrive more in their home environment. They do not want her to continue to be hospitalized…that is, until the time comes for her next surgery.

We’re not there yet. She has a week, right? Chris says she needs a “pep talk”. Can you help? Write her your own pep talk, a prayer, a chant…whatever floats your boat. It has worked before, I believe it can work again.

Here’s mine:

Sweet daughter of mine,
Eat, little sis, please eat. Remember when you could? Remember when you did? Please remember. Prove the doctors wrong. Show them you can do this…because you can. You are breathing on your own, that is a victory. A mountain you have climbed, an odd you have beat. I have watched you take a bottle, I have helped you with my own two hands. Do it so you don’t require  another procedure, another risk of infection. Do it so you can further strengthen your title of “Fighter”. Do it so you can come home. We’re still waiting for you. Is there something you are trying to tell us by not taking a bottle? If so, be clear once again, my darling. Tell us what you need. I spend my days watching the monitors which tell us the things you cannot. You’ve been clear thus far, keep it up. Help us help you. Remind me to be optimistic rather than to live in doubt. I remember on night one…I wondered if I would have the chance to have you close enough to capture my heart. Well, you did. Even though they cut the cord, nothing was able to break our bond. Now it seems I need you like I need water. Like I need air. I can’t imagine my life without you…62 nights you survived with the help of oxygen, now, on night 63, you do it all by yourself. I know it is hard, baby, but accept this newest challenge head on. And win. I believe you can. I choose to believe you will.

I pray for patience, especially over the next week. What I want for her and what she needs may not be the same. This I recognize and must continue to for the rest of her life. What I want no longer matters…it is about what she needs. Perhaps that’s the simplest way of defining parenthood. Whether a child is healthy or sick, a person understands true selflessness the moment their child is born. I thought I understood this well when Cooper was born, but somehow I am learning more and more as time goes on. I only wish I understood this more at a younger age, when I should have appreciated my own parents more. Their sacrifices were taken for granted. The life they provided…too expected.

…If only I knew then…

All I can do now is pay it forward. Be half as good to Cooper and Audrey as my parents have been in my life. Some lessons were harder than others, but all of them resulted in growth one way or another.

Mom and Dad, thank you. Thank you for the lessons. Thank you for my brothers. Thank you for giving us life.  

Until we know more, picture Audrey bunny gleefully taking bottle after bottle…after bottle.

Love and hugs,
R

Bunnies

Slow & Steady Wins the Race…Right?

I have an Aunt named Lisa. She is my mama’s sister. Once she starts laughing, she sometimes has trouble stopping. That, in turn, makes everyone else laugh and laugh…and laugh. She calls my mom “Nay” and has for as long as I can remember. She loves the idea of going on a boat ride but screams most of it because it is just too rocky. She has light brown hair and clear green eyes. Candy is her weakness. She sings…loud and proud…whether she is on key or not.

Lisa has mental and physical disabilities. She is not defined or labeled with a specific diagnosis or syndrome. I grew up watching my grandmother, Barbara, take care of Lisa in so many ways. I remember when I started to realize that although she was over 20 years my senior, I became more capable. I remember a day when my own son was playing with her so sweetly it melted my heart. They laughed and copied each other. Then, she got up to walk and he mimicked her. Her walk is unsteady and he watched and tried to walk in a similar fashion. I didn’t know if I should stop him or just let it happen. I did nothing. He wasn’t making fun or laughing, he was taking it all in, trying something different…learning.

Her needs are great but I have heard my grandma say how truly thankful she is for just how much Lisa is capable of. She can walk, feed herself, see, hear, speak and so much more. She communicates and contributes by working, she has her own personality.

I pray our little Audrey can make us laugh like Lisa does. I hope that someday when Cooper has children of his own, they will be as fond of Audrey as I am of Lisa. I am thankful for things Lisa taught me as a young person about respect and differences. Things I hope others will learn from Audrey.

We continue life at OU in the NICU. Audrey is over eight weeks old now. Things just move slow with little sis.

Patience is a virtue.

Slow and steady wins the race.

Love is patient and kind.

I know these sayings. I have probably overused them in my 30 years of life. But when you are smack-dab in the middle of it, patience can take serious effort.

Just today, a cardiologist consulted on Audrey and told me, “You’ll just need to be patient while we watch and see.”

Ey-yey-ey…he’s about the 27th person to say that in the last seven or so months. But okay, I’ll keep working on that.

He was referring to the function of Audrey’s pulmonary valve. We know, because of the Tetralogy of Fallot, that hers is small. But we have understood it to be on track with no immediate need to intervene. While she is not on as much oxygen support now, she is not breathing in an efficient manner. Her heart rate is high, as well her respiratory rate (how quickly she breathes). This also causes problems with her ability to take a bottle. While she was able to do so prior to surgery, now we are told that she is struggling to take a bottle due to her breathing pattern. Her body is telling her to breathe over taking a bottle. This is concerning to her team and they are taking several steps quickly to overcome the issue. Should their efforts not lead to a resolution, she may have to have a procedure done using a heart catheter to place a stent in the valve. I am prayerful this will not be deemed necessary.

So, for now, we continue to trust, wait and see. I get frustrated because she used to do it. She used to be able to eat from a bottle only occasionally lacking stamina to do so. Now her body just won’t allow her to breathe well while trying to eat. We hope to know more in 5-7 days.

It has been mentioned previously that Audrey’s two separate and unrelated heart conditions are almost never seen in the same heart. One or the other are fairly uncommon, but paired are very rare. They told us they will be publishing her case for others to learn from now and in the future. They apparently had their “blinders” on, as one cardiologist put it, because they already knew of her TOF condition. They weren’t looking for anything else while all along, another issue completely was getting worse and worse.

I regret that it was at her expense that others will gain this learning opportunity…but how amazing it really is.

This little girl will be a case that doctors and students alike will learn from. That other babies will benefit from. Her case is rare, yes, but also so important. She is making a difference, by living. By breathing…even if it isn’t very efficiently. I can’t say that I have ever taught anyone anything. But at eight weeks old, she is a teacher of many things.

The world continues to turn, life still happens, people move forward. Sometimes it feels like I watch it all happen around me while I stay put, not moving, not going anywhere. But, I would rather stay put than go backwards. I am thankful for any and all progress. Thankful for supportive family and friends. Thankful for the tireless work of nurses and doctors.

Just…thankful.

Cheers to the latter half of the week, everyone. When you make it to the weekend, pat yourself on the back, sit back and enjoy…

Love and hugs,
R

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The Key Ingredient

A rainy Saturday last fall, I was newly pregnant and feeling all the normal things one might expect. Particularly, hungry for carbs and sweets.

Our little growing family readied the “fixins” for a pancake breakfast at home. The bacon was crackling and the pancakes fluffy and gold. Everything was ready. Except wait…the key ingredient was missing. We had no syrup.

No syrup? Really? What’s a pancake feast without that sugary, sticky drizzle?

I thought about that morning a lot this week. Our baby girl has a room ready to live in. Pictures are hung on the walls, sheets line her crib, and lamps have working lightbulbs. It’s ready.

She’s not.

She’s the missing ingredient.

I wish Chris could run out and get her as easily as he could a bottle of syrup that day last fall.

Today is #52. Fifty-two days she’s been in this world. Fifty-two days she’s taken residence in a hospital. She continues to be seen and consulted by a large team of doctors. Cardio, neuro, orthopedic, neonatology, ENT and genetic specialists all learn more and more about her each day. At the same time, there is still much to be determined that only time will reveal. Today, in one work day, an eight-hour period, each one of those specialists visited Audrey. They asked more questions then they answered, but each are doing the best they can.

She has surpassed the six pound mark…by half an ounce, but it counts! We’ve not had the opportunity to start bottle feeding again, but once her breathing becomes more stable we will. She has remained on high-flow oxygen this week, I would love to see her graduate to slow-flow in the next several days perhaps. Her heart surgeon plans to remove her chest closure stitches tomorrow (Saturday) morning.

I still feel so full and in love every time I hold her. It doesn’t get old. I notice something different or I catch a glimpse of a grin here and there and I melt into a puddle.

She’ll yawn and then smack her little lips. Her smile always starts with a curl on the left side of her mouth. She sneezes louder than her most angry cry. Her knees are the softest thing I think I’ve ever felt.

It’s late, I miss her. I’ll call and check in with the nurse and she’ll tell me all is well. Sure, I know it is.

But…it just…isn’t.

I’m proud of our baby and her will to live. I’m thankful to God for His grace and mercy. For His daily reminders of what truly matters. Even in the midst of my darkness, He casts a light that cannot be ignored.

Enjoy the weekend ahead and be a light for someone in your life.

Until next time…

Love and hugs,
R

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