CHD & Mental Health Awareness

I don’t know what button was pushed, but suddenly instead of 2 nurses in the room there were MANY. Lydia’s external pacemaker—the one in place while we waited to see if her heart rhythm would normalize after open heart surgery or if a permanent pacemaker would have to be placed—was malfunctioning. A lead connecting the external device directly to her heart had completely severed in a fluke equipment failure. We had anxiously been assessing her stressed symptoms when we realized this. In that moment, the head nurse steel-eyed me as the room filled with people and a cart full of equipment and said, “Normally I would use anesthesia, but this is an emergency...” She then sewed a thick metal grounding wire into Lydia’s stomach while another nurse and I held my screaming 5 month old down. I was terrified. She was in incredible pain. I didn’t know any of these people and the situation was completely out of my control. One of her life-sustaining organs wasn’t working and neither was the equipment supposed to save her. It. Was. Hell.

I will never forget that day or those feelings. I thank God for every miracle that allows her to still be with me, today.

This is just one small example of what medical trauma looks like. In addition to facing the pain of diagnoses & surgeries, there are always desperate, unpredictable moments that crop up. These incidents are often accompanied by months+ of PTSD symptoms. I belong to several online support groups and one of the MOST COMMON requests I see in the local heart family group is “Where do we find a counselor? For my heart warrior. For their siblings. For our marriage. For me.” It is a staggering problem; one I know, personally. We are not doing enough to support these families.

I recently attended a lecture for heart parents in which a licensed therapist was asked point blank why there was not emotional support or counseling provided for parents of cardiac patients at our local children’s hospital (which serves about 5 states). She regretfully gave this heart-breaking answer: Counseling* is not provided to anyone who is not the direct patient because it is considered a “lost cost.”

In short, “Who pays for that?”

The answer is, especially when no support is provided, EVERYONE. Providing counseling to a five month old is pretty futile. All that baby wants is what she knows as security—Mom and Dad. And if they are falling apart? Well, good luck.

I cannot emphasize how desperate the need for emotional support for families of critically ill children is. Especially when some hospital stays last months and treatments are lifelong. The consequences for not providing this type of care affect the patient, the entire family, and society as a whole. The statistics for marriages in these households are not good. The statistics for the emotional well-being of patients long term are even worse. Medical trauma is real and when untreated wreaks havoc on patients, families, and communities, alike.

February is Heart Month & I felt this was the most important thing I could share. For every post you see about raising awareness for the physical treatment of CHDs (1 in 100 babies will have one), please consider the emotional battles fought, as well. The pain and consequences are real. We HAVE to do better.
I recently joined the board of a local nonprofit that provides support to heart patients and their families, including those who have lost family members to CHD. There is absolutely a supportive, knowledgeable community there for families fighting CHD! But there are things everyone else can do to help, too. Speak up. Normalize mental health practices & therapies. Donate time/money to support groups or emotional wellness programs. Recognize that physical & mental health must be mutually treated. Listen to a hurting friend. WE CAN DO MORE. It matters.

If you are struggling, please don’t do it alone. Ask for help. It’s a good thing. 🙏🏻💛

*Our hospital does provide social workers, however they are severely understaffed. We heard there was someone assigned to the cardiac ICU, but Lydia’s nurses were the ones who (on top of their medical assignments) completed the tasks our SW would normally do such as securing overnight hospital accommodations for us and offering limited (but treasured) emotional support.

Post-Op Update

Everyone keeps asking me how we’re doing and I guess it’s kind of like this. The dust hasn’t quite settled and everything feels slightly out of focus, but the light is still shining through. ❤️

Post Op Day 2 - Off the Vent!

I cried a lot of tears, today. That dang vent tube finally came out. I wish I could convey the fear that thing instilled in me—more than the surgery. I’ve known too many kiddos who have struggled with getting off the ventilator. One who was lost because she couldn’t. Every day longer on the vent comes with a price. While I suppose Lydie wasn’t on it for an extremely long time, the terror in my heart and the delays along the way made it feel like forever. And to watch the monitors knowing that my child was not breathing—she was dependent upon a machine to breathe FOR her; to force life into her...

I asked God for some miracles, today. When her sedation wore off enough for some sleepy smiles to sneak through, that was a gift. When it wore off a little more (gotta be awake to want to breathe, apparently) and those big blue eyes that I haven’t seen for days locked on me, it was a bigger gift. “Hi, Baby!! Mama’s here for you!” And when that dang scary but life-sustaining tube came out and her low-muscle-tone, swollen airway held and filled with THE MOST BEAUTIFUL hoarse little cry I have EVER heard... that was a miracle. I am still crying. Once again, every day, a thousand times a day, God is good. 🙏🏻 #misslydiefaith #openheartsurgery #heartwarrior #theluckyfew

Post Op - Next Day

Little Lydie is doing well, today! She is making small but important strides. We started feeding her (yellow nose tube) today and I am sure that feels good! You’ll notice she still has the ventilator tube in her mouth. That was going to come out today, but girl took things into her own hands and extubated herself at 4 AM last night. Ouch, but can’t say I blame her—no one likes a tube in their throat. The nurses were right there to put a new one in and she’s fine, but did cause some swelling to her poor little throat so they are giving her an extra 24 hr for that to calm down. Also she is well swaddled, now 😉 They’ve been weening down the vent today in hopes of extubating early tomorrow, so both those tubes could be gone 👏🏻👏🏻 Her heart looks good and some of the things we thought would be huge problems she has just cruised through! 💪🏻🙏🏻 Her heart rhythm is still a little off, so we are hoping that issue resolves in the next couple days 🙏🏻🙏🏻🙏🏻 All in all she is doing well. It’s hard to see her like this, but we stroke her and talk to her and keep in mind that this is all baby steps to a better life! Huzzah for modern medicine!!!

 ❤️

Tiny girl, many machines  

The hospital IT system went down the day of Lydie’s surgery so Dan spent the whole next day putting out fires and responding to requests for his dept. Because he had nothing else to stress about, already 🙄❤️

Post Op First Look

 *** WARRIOR ***

The great irony is, she will spend most of her life trying to prove herself and gain respect, when in reality, she has already been through more than most of us ever will. ❤️

I have never felt more proud or more privileged to be a mom. 😭💗 #heartwarrior #theluckyfew #misslydiefaith #shouttheirworth *** Surgery went well. There are some big things we are still waiting to see as time unfolds here in the hospital, but she is doing great. Heaven has been near today. God is good. Man, we love this girl!!! THANK YOU for being there for us!

The Middle

I'm running out of words. Well, actually, there are plenty of words--the essays come spilling out of me at 4 in the morning while I stare into space willing myself awake and praying for my baby to eat. But those aren't the kind you share on the Internet. Sometimes when you're too honest, people get weird.

And frankly, I don't owe those people anything. I think it's important to remember that. But I do owe myself some things, and self expression is healing for me. I also think about the other mothers going through similar things now or in the future. The least I can give them is honesty and an accurate picture. Some of my greatest comfort these days comes from reading the words of other moms who have gone through the impossibly hard and made it. 

The problem with that is, you have to write about the impossibly hard, too.

So here we are. 

First, I'm tired. There's any mom tired, there's mom of a newborn tired, and then there's whatever crazy planet we're on tired. And that's WITH all the help flooding in from family and friends. 

This is hard. I've done some hard things in life, but this has got to be the hardest. Watching my baby struggle like this is hard. While she isn't doing horribly (thank heavens), she isn't doing well. Sometimes it's scary. And for a mother, it's heartbreaking. 

We, and usually I, feed her every two and a half to three hours (four at night), always for at least an hour, sometimes up to two at a time. She gets down 45-80 mls or about 1.5-2.5 ounces. We're supposed to hit a minimum of 15 oz total a day, but for a whole week we were well under that. She weighs 10 lb 12 oz, which is actually up from what she lost during our awful feedings last week. She eats as much as a NEWborn, as often as a newborn, with the skill and stamina of a premie, at 3 months old. 

On good days she's observant and communicative, and her grins are HUGE. Happiness just streams from her. On the not so good days, her eyes are listless, her skin is pale, and her smiles are few. Sometimes she cries, except she doesn't have much energy to cry, so she either sounds like a normal baby who burns out really fast, or she just emits these barking, abbreviated calls of distress, because that's all she can muster. I've seen her hands turn blue. Sometimes she coughs and it sounds scary because there is fluid in her lungs. Always, when she breathes, her chest retracts because it's just so hard. And even though the doctors are watching her closely and she's on some medication which is starting to help a bit, I know and have a moment by moment visual reminder: this is no joke.

I have a special connection with this baby. I can look in her eyes and KNOW her. Sometimes, when she is struggling to eat and fussing and upset, we'll lock eyes and I will sing to her. And in that moment I see and feel her latch on to me for strength, desperately reaching out to me and pleading, "Can I do this?" 

"You can do this," I tell her. "We can do this."

She believes me and pushes through. I watch her do it. There's nothing more humbling or inspiring than that. She is a warrior.

Some days, in between feedings, I fall on my knees and beg God for help. Often before feedings, and during feedings, I pray that she'll be able to do it. I pray for her, I pray for me. I pray for strength and for a bright future day when my baby girl can be just a baby girl. When we'll blow bubbles and buy headbands and go outside. When I won't fear every second that maybe I should call the doctor NOW and make him fix her!! Hurry, fast, before something really bad happens.

It's heavy. It's heavy and it's hard and it's sacred.

I remember hearing once that when George Washington was leading his farmer troops through the snow in the winter, they left bloody footprints behind them in the snow. I've heard similar stories about Mormon pioneers. People hurting and giving everything they can for a cause they love. Sometimes, I marvel that while I'm walking around in Target, there isn't a visible trail of my own bloody footprints marking my every step. Only it's my mama heart that's bleeding out--all the time.

I know. Dramatic. And I said I wouldn't vocalize my 4 AM thoughts. Sorry. To be fair, I don't go to Target at 4 in the morning.

But back to the sacred. 

You know the cheesy and over-quoted Footprints in the Sand poem? The one where Christ tells the narrator He carried him through life's hard spots? It's less cheesy now, and more a living principle. Because no one can do this on their own. Because the only reason I can get up in the morning and face the day is because Someone Else gives me the strength and grace to be able to do it.

Do you know what's amazing? What's inspiring? What's incredible?

It isn't me. 

What's amazing is how many people can come together to help you when you need it. How many people love your daughter with all their hearts, even if they haven't met her.

What's inspiring is learning first hand how, "The worth of a soul is great in the sight of God"

What's incredible is knowing your own limitations--your complete dead end, ain't goin' any farther than this, I CANT'S; and watching God redefine them by adding His CAN. 

We're in the hard part. I know that. The success rate for these kids after open heart surgery is amazingly positive. Like 99%. Her defects are fixable. I thank God for that. She will learn how to eat, come off her oxygen, and be her happy, full-spirited self. We're just in the middle. In the middle with our eye on the horizon, trying not to get sucked down amidst the progress we can't see that we're making. While the whole time, God truly carries us. That is a truly sacred place to be.

"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. ...For I the Lord thy God will hold thy right hand, saying unto thee, Fear not; I will help thee." My all-time favorite scripture: Isaiah 41:10 & 13.

And an abbreviated version of this quote lives on my wall and is making its way into my heart:

"If we give our heart to God, if we love the Lord Jesus Christ, if we do the best we can to live the gospel, then tomorrow—and every other day—is ultimately going to be magnificent, even if we don’t always recognize it as such. Why? Because our Heavenly Father wants it to be! He wants to bless us. A rewarding, abundant, and eternal life is the very object of His merciful plan for His children! It is a plan predicated on the truth “that all things work together for good to them that love God.” So keep loving. Keep trying. Keep trusting. Keep believing. Keep growing. Heaven is cheering you on today, tomorrow, and forever."

Tomorrow the Lord Will Do Wonders Among You - Jeffrey R Holland

Heart Failure Part 2

Ok, I was able to get Lydie into the cardiologist, last week. He talked me down from Defcon 5. :) She is actually in heart failure "But that's just what we call it...." (Relax, Mom?? Right.) Her heart is just working really hard and it is affecting her body, as I said before. But, it's also not uncommon, and it doesn't mean she's going to die or anything. He gave us some medicine to get rid of some of the weird symptoms that were alarming me and the pediatrician. Hopefully they will help her body AND she'll start to eat better. We also quadrupled the amount of formula we're adding to her breastmilk. So basically she gets a chocolate shake calorie haul every meal. We have 2 lbs to gain optimally for surgery, but if she doesn't respond to the medications we may look at moving the surgery up, anyway. The feeding tube thing is always an option if she stops eating enough, but he didn't think they would admit us to the hospital for that clear until surgery--she'd just be on one at home. In any case we're trying to avoid it. They tell me that eating is like running for her, and she just does it 7-8 times a day for 60-90 min... no big deal! Poor thing. She's tough! She really really REALLY can't get sick, so nobody visit us ever, and someone adopt the two boys, k? Haha. Actually I just bought some facial masks and am about ready to say nobody but Mom and Dad can come in Lydie's room. An illness would be 1) super scary and 2) put the surgery back TWO MONTHS. So we're doing all we can to avoid that. We have not scheduled the surgery yet---they usually schedule them 6 weeks out, though, so he told me it could be "soon." I have my next appointment with the pediatrician in 2 weeks and the cardiologist in 3, if all goes well. 

In positive news, I asked, again, what things will look like for her after the surgery, and it's super optimistic. She shouldn't be any more susceptible to illness than a regular kid with DS, which is a huge blessing because some of these heart babies are very very vulnerable all their lives. And the problems that she has are fixable. They keep telling me that, and after reading about what some other families have to live with--I will TAKE IT. Man, life can be really hard. So, anyway, onward we go! Thinking chubby, healthy thoughts!

It's crazy, but it won't last forever. We're going to get this girl through this and she's going to change the world. She already makes ours so much brighter. Like, seriously. She's the best, cutest, happiest baby. 

Eating and Marathons

They tell me that eating is just like running for her, and she does it 7-8 times a day for 60-90 min each time, all so we can get in those precious 15 ounces/day. My little warrior. 

Heart Failure

Thank you to all who have been praying for Lydia. She needs our prayers and Heaven’s blessings now more than ever. At our appointment with the pediatrician on Friday, we learned that she has gained weight (!!!) but that she is also in heart failure. This is not unexpected due to her heart condition, but is hard news. Essentially, her heart is working too hard, cannot continue to do so, and her body is being affected. She is experiencing difficulty eating, increased difficulty breathing, and some other symptoms. We see a cardiologist next week.
As miserable as those symptoms sound, she continues to try to eat, shows awareness, moves her body, and gives us giant grins when she sees us. The light and joy in her special spirit will not be suppressed. HOW WE LOVE THIS GIRL!!
Given the stress on her heart, I would assume her surgery will be sooner than later, but that will be up to the cardiologist. Some children endure heart failure for weeks before surgery—it all depends. We will keep you posted. Thank you eternally for your prayers. We could not keep going without divine aid or the earthly angels Heaven sends us. I marvel that in the midst of so much heaviness and sorrow we can feel so much light and love. I truly don’t think it has anything to do with us, but is more a sacred opportunity to witness and experience Heaven’s love and power. 
We love you. We love Lydie. We are so grateful for God’s love and presence in our lives. We are blessed.