Be You Bravely

The bravest person I know is 11 weeks and 2 days old. Her name is Annie. She lays quietly alert in bed as the yellow coats fill her room. Her eyes search quickly, carefully studying the furrowed brows above each mask. She locks looks with the one in nearest view and an innocent smile breaks across her chubby face. It’s as if she realizes, oh it’s them again! I know them!

How does she not remember that “them” are the ones who stick and poke and poke again? Doesn’t she know they’re the ones who hold her down, tie her up, and squeeze until they get the last drop of liquid red to fill their morning capsule?

While they prepare for their daily draw, she entertains them with her sweet, hospitable spirit. She welcomes them to her bedside with a sheepish grin that cracks into a wide smile when they speak. Her arms batter in rhythm to wave hello and her legs keep step too, showing off her chunky thighs. But then it’s time.

The nurse pumps Annie’s arm, swabs the site, and pierces the vein. Annie shrieks and searches for me. Of course I’m there on the opposite bedside, holding her head and stroking her hair. But tears burn my eyes too and I turn my head away.

It’s over as quickly as it began. The nurse covers the fading sticky residue with a new Sesame Street strip. And Annie is already gargling and cooing again. She thanks the nurse with her vibrant smile and resumes her kicks. The courage and kindness I see in such a tiny girl amazes me.

I hope that I can be as brave as she is one of these days. To smile in the face of pain. To dry my tears quickly. To be resilient enough to pick up where I left off.

Oh, and because she’s such an inspiration, we are making heart for Annie shirts. Let me know if you’d like one. We can ship them too!

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Guilt and Fear

You should purée your baby’s first tastes, save the world and your baby’s butt with cloth diapers, and put your baby to sleep on her back by 8. Thank you, parenting articles everywhere! But where is the 10-step list to holding it together when your life is in shambles?

I am doing my best to navigate being a mom of a two-year-old who needs holding, snuggling, chasing, tickling, laughing, singing, spanking, and loving. Mom of a two-month-old who needs nursing, rocking, sitting, praying, and special care taking. And wife to a husband who is facing the most difficult days of his life and needs hugging, listening, supporting, and encouraging.

All of this thousands of miles from home. Countless days from familiar faces. Memories away from comfort. And too many sandwiches since a home cooked meal.

Undoubtedly, I am leaving many things undone. When I choose to take Audrey to the zoo one morning for a special treat, gnawing guilt takes over that I’ve left Annie lying in a cold hospital bed. When I sit with Annie till late into the night, gnawing guilt whispers to me that I’m missing Audrey’s bath and bed time. When I sleep comfortably through the night in my Ronald McDonald house bed, gnawing guilt haunts my dreams of Annie being bottle fed every three hours by a stranger because I’m not there to nurse and nuzzle her back to sleep. When I haven’t hugged my husband at the end of the day, gnawing guilt tells me it shouldn’t be this way.

And then fear jumps through the door that guilt left gaping open. I fear I’m not brave enough to mother a heart child. I fear I’m not strong enough to bear the burden for my family. I fear I’m not energetic enough to raise my toddler. I fear that this life, this story that God is writing, would’ve better been anyone else’s.

“You may feel unqualified, uneducated, untrained, and even unworthy. Yet those are excellent qualifications for God to do a mighty work.” -Charles Swindoll

Can’t Catch a Break

I recant that the days at home with a toddler and baby are the hardest days I’ve known . Fifteen days in the hospital with a rambunctious, homesick toddler and a smiley but heartsick baby are much harder. I told a friend that these days are more challenging than any I ever imagined facing in my worst nightmare.

But it’s not a nightmare. I’m not comfortably snuggled under my flannel sheets while the details unfold. I’m painfully awake from the exhaustion of unending, worry-filled hours. This is my real life.

Yesterday the surgical fellow came to consent me for Annie’s heart cath. She explained that Annie would probably get a blood clot, could experience arrhythmia, might have problems with anesthesia, and oh yes–she could also die during the 2-hour procedure. Signature please?

The good news is that the doctor thought everything in Annie’s heart looked exactly as it should, including the connections and repairs done during her first surgery. The bad news is that the doctor thought everything in Annie’s heart looked exactly as it should, leaving us still without any known causes for her right ventricle failure. Since they can’t identify a cause, they can’t administer a fix.

They did determine though that the surgeon agrees to still move forward with repairs on her birth heart! Great news! But because her heart is already failing, they can’t guarantee results. At this point though, they still see it as the best option for Annie.

We were happy until this morning when we saw Annie. Her nurse said she wasn’t doing well. She was on a lot of oxygen, she had fever, she was coughing a lot, and her sats were in the 50s. Not the way I put her to bed last night! For the first day ever, our Annie is actually sick. So sick that they gave her a blood transfusion through the new picc line that resides pseudo permanently in her leg. And it’s also been confirmed that she has a cold.

Honestly, I’m angry! “A cold on top of everything else?? Could’ve skipped us this time around, God!” But even as I mumble it, my heart stings. He’s not skipping us. I have another day with Annie. Another day where she cries congestedly for me. Another day where the doctors have agreed to do all they can to give her a chance at life outside this 6th floor room. Another day where Audrey gets to kiss her baby sister. Another day where I get to rock both of them to sleep.

The plan is to begin weaning Annie off of her IV drug and convert her to oral medication to treat her heart failure. We have tried this twice during our two weeks here already. Both failed attempts. So we will try again with a different medication and see how her heart responds.

For now we know that her heart failure blood count numbers doubled overnight. They are saying it could be related to various fluids still from the cath or it could be true. They will recheck with a blood draw on Monday.

And for now we are starting to feel like we can’t catch a break! Phew! Can someone wake me up when it’s all over?

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If not…

If I close my eyes tightly enough I can hear Audrey’s shrill laughter keep rhythm with her bed bouncing. She stops just long enough to ask, ” ‘Mon, Annie. Wan’ jump Audrey?” Matt swings Annie’s dangling legs from side to side, then up and down mimicking a jumping motion. Audrey squeals, “Mommy, look! Annie jumpin’ bed Audrey!” Then chides, “Very kerrful, Annie!”

My sweet daydream is rudely interrupted by hallway tweets, “Attending 6 south 5 bed 3.” The code call. Someone down the hall needs his life saved. And once this week, even though the call was made, the life wasn’t saved… The awful truth I know is that Annie is only a few beds away and she needs life saving too or we would still be at home worrying over mattress head bumps.

Instead, our family’s days are no longer lighthearted. I don’t get to dress Annie in the outfit I’ll bounce her through church in. Now I undress her so I can restrain her for a heart echo–The heart echo we held our breaths for, hoping against hope that Annie’s heart function would improve.

It did not. It looks the same as last week and the same as the week before when we were admitted. Eleven days on an IV drip of heart failure medication has only maintained her heart failure. Thousands of prayers for healing on Annie’s behalf have only maintained her heart failure.

So now we wait some more. We wait to see when her cath is scheduled and wait to hear what they might find. There’s a small possibility that they could identify a secret, undiscovered cause to her heart becoming sick. But more than that they will be looking to see if Annie’s birth heart is salvageable or if we need to put her on a waiting list for a new one.

I still cannot fathom how my seemingly normal, smiley, social baby who is snuggling me and laughing aloud in her sleep could be sick enough to need a new heart. And I cannot fathom how all of these prayers can go unanswered.

Yet, I know God heard. And I know he can choose to act in any way he chooses. And I also know that if not, he is still good.

But it doesn’t mean I have to like it. I definitely don’t claim to understand it. I am clinging to what I said in the beginning: this is God’s story and that somehow makes it good.

Not the Days I Wanted

Sitting, waiting, hoping, praying– all in this same hospital room for 8 long days now. As soon as we walked in this morning, Audrey lost it. She went completely hysterical, flailing on the floor screaming for me to hold her the whole 20 minutes I nursed Annie. She asked, “Mommy, rock. Mommy, hold you. Need Audrey’s milk. Need Audrey’s blanket.” And finally she blubbered, “I want go home,” in a surrendered sob.

Audrey is doing exactly what I want to do: desperately groping for any form of comfort. (How many Dr. Peppers can I drink in a day? The answer is ZERO because it’s nowhere to be found in Philadelphia!) And I keep blubbering to God, “I want to go home! Our family can’t handle this much longer.” All the while Annie stays in her room on her IV drip wondering why she’s here because the rest of her body hasn’t yet noticed that her heart is sick.

The hardest part is knowing that I’m praying to the God who is able. “God, since you’re able, what the heck are you waiting on?! Our family is hardly hanging on!” Yet at the same time, I trust in his character, so I trust him. And I know that his ways are perfect.

I talked to two of our Little Rock cardiologists yesterday, both godly, caring men who have made themselves so available to our family. They assured me that we aren’t just waiting around for nothing. It’s still possible that Annie can get better and move on to the next surgery. And then they reminded me that the Lord numbers our days.

God knew that these were a 2-year-old Audrey’s days and these were a 2-month-old Annie’s days. While they may not be the days I want with my girls, these are the days I have. They encouraged me that instead of wishing away these days for better ones, I should enjoy them. Because these may be the days I get. Annie isn’t guaranteed tomorrow and neither am I (James 4:14).

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Rejoice Always

Annie’s heart echo yesterday showed that her heart function has not improved at all even though she’s been on medication for almost a week. Her IV medicine was stopped Tuesday overnight and switched to oral medication. Today, her IV was placed back in for her to receive the IV medication.

Words/phrases I don’t like, all heard from Annie’s medical team within the last 24 hours:

congenital heart disease

single-ventricle baby

IV

open heart surgery

critically ill

hospital stay

low heart function

heart failure

we don’t know why

we can’t tell you what to expect

the textbook says so, but I can’t say we always see good results

IV again

we will keep trying

wait longer

keep waiting

wait some more

heart cath

transplant

we will know in a week if her heart can handle the next surgery or if we need to “list” her

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” -Revelation 21:4

Oh, heaven, come quickly.

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Critically Ill

At one of our prenatal visits, Annie’s cardiologist told us we’d have a critically ill child. He went on to say that having a critically ill child is one of the most stressful things on a parent as an individual and also on the parents’ marriage relationship. Since we’ve been at home for 6 weeks living a totally normal life, I started thinking he may have over prepared us. Now, I get it.

I’m learning that having a critically ill child means a multitude of things:

-Having her treatment be our lives’ main priority because it directly correlates to her survival (Did I mention we’ve been searching 3br/2ba in Philadelphia on realtor.com? Just for the “fun” of it, ya’ know?)

-Missing our other daughter so much that a simple phone conversation sends me into a deep funk. Her saying, “Mommy hold you. I’m ready go home. Bye, Mimi,” is not easy to hear. I, too, am ready to go home, Audrey. I’d give anything to be there soon!

-Being homeless, except for a hospital “bed” in Annie’s private room. Which also translates to surviving on 2 hours of sleep, eating out every meal, using public restrooms for days on end, and fighting over the cardiac family house community shower. I really did almost get beat up for carrying my shower stuff into the bathroom at the wrong time. Just as I was closing the door yesterday morning, another mom shoved her way in next to me and smarted (head bob and all), “I know you see me standin’ here with my shower stuff and I know you ain’t ’bout to be gettin’ in the shower when I been waitin’.” I thought about telling her how long I also had been waiting and declaring that I was also clearly standing there with my shower stuff NEXT to the actual shower. And then I reminded myself, it’s just a shower.

Whew things can feel crazy here! And those logistical details have nothing to do with Annie’s health. They are just an added bonus.

As far as what it means for Annie to be critically ill, it seems to mean that although everything seems fine, it isn’t now and never will be. Since we got here Saturday, they’ve run countless blood tests; taken 3 chest x-rays; conducted 1 heart echo; documented every ounce in and weighed the diapers to count every ounce out; and watched her heart rate, respiratory rate, blood pressure, and oxygen saturation every minute of every day. Sometimes the things they find on the screen are not what they see in Annie. Her cardiologist admitted that they feel they’re treating a screen rather than a baby. Because last night, for example, while I “slept” in Annie’s room, all of the sudden a herd trampled down the hallway to our room, blinded Annie with glaring lights, tore her blanket open, ripped her shirt up, shoved their stethoscopes simultaneously in their ears and to her chest to see why her sats were alarming the nurse at 68. Annie was comfortably asleep until they continued with slamming her bed flat into CPR position and laid the CPAP mask in her crib just in case. As she roused, her pink cheeks creased and she sweetly smiled up at the panicked party. The doctors easily concluded that they thought she was okay.

This morning when the team rounded, there was a new plan. Thankfully the doctor said that he actually thought that her medicine and medical treatment could be causing her low sats and blood pressure. She’s been so bothered since she’s been here and that would upset anyone. Hey, I’m 30 and I can promise you I’d cry if my feet got pricked for blood multiple times a day and I had continuous IV meds stinging into my right wrist. He gave orders to lower her IV drip and increase the oral version of her medicine and for the nurses to otherwise “leave her alone today.” Music to my ears!

He was right! Her blood pressure is great. Her sats are up and her oxygen is almost back at room air level now. Just in time for her 8 o’clock dose of oral meds. So we are still waiting. We don’t really know anything at this point. They’ve told us that they want to just keep watching her and waiting and that they will not send her home until it’s absolutely safe to do so…which they said could be sometime this week if they see her respond well to oral medication plus increased function indicated in an echo or it could mean not until after her Glenn procedure currently scheduled for August 18.

That makes me so homesick that all I long for is the comfort of a quaint rock house off of a Calumet, OK red dirt road where Nana is working up a glass of sweet iced tea and Papa sits rocking on the front porch.

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