The day Lydia was born, Dan met me after 3 job interviews. The “we regret to inform you” news fell heavy but flat somewhere after “Your baby has Down Syndrome,” and, “your baby has 4 congenital heart defects & will need open heart surgery.” With no future job prospects, we soon faced Dan’s fellowship & our insurance coming to an end within just months, all with our daughter requiring life-saving surgery. It was a frantic time. My prayers were anguished; desperate; unceasing. They were sad, raging, mortal prayers, but somehow heard. Two months before Lydia’s surgery, Dan started full-time at Primary Children’s Hospital. It was, by no exaggeration, a miracle for our family on multiple levels. A witness of a very patient, Seeing God.
A couple of actual years, but a lifetime of healthcare (personal & professional) experience later, Dan applied for a different position within Primary’s (administration, oncology). At this juncture, I felt something I never felt before regarding his career: deep personal investment. Things were different. This was not just another job in a field we had long considered from afar. This was a job in a field we were intimately entangled with. These were our people—both caregivers & patients. Especially patients. My feed, every day, is full of warriors w/ connections to children’s hospitals. These are our friends. We know their stories before and after the hospital. This is OUR story.
So when he said yes, I said yes, too. Emphatically. I knew that this new job of his would be hard, but I don’t think there’s a cause closer to our hearts or more worth a fight.
Primary Children’s just opened a new campus. Because of Dan’s roles, he had opportunities to help design parts of it. While my greatest wish for you is that your children never have to visit, please know that if they do, great love was put into it—and walks into it—for you and your precious kids, every day.
Heart Week 2024!
Happy Heart Week 2024! ❤️❤️❤️ Admittedly, knowing we are going into a pacemaker surgery this year, and having already spent some time in the cardiac care unit with RSV, it’s a little closer than usual. This sweet girl of ours and her warrior ways. Always strong, always fighting. Always reminding us of what’s important and to make each day count. To all the warriors, to all the angels, to all the families. ❤️
Surgery 2023
Lydia had surgery yesterday—it went well. We’d planned 3 surgical procedures & two tests—a full schedule. Anytime Lydia has any procedure done that requires anesthesia it’s a big deal. Her low tone puts her airway at risk, & her pacemaker requires additional modifications & precautions. The entire surgical team makes adjustments, bringing in extra staff members & using special meds to ensure her safety. Part of the reason we piggyback as many items as possible when she is sedated is because it’s such big deal—we like to do it as LITTLE as possible. Her doctors are wise & carefully evaluate benefits v. risks. Yesterday her ENT pivoted in the moment & decided the riskiest procedure was unnecessary, & though that was a significant change in plan, we trust his judgment.
Being a medical mama is difficult. I have been through many surgeries & it’s strange knowing that we will inevitably go through many more. It’s even STRANGER having a relatively specific date for some of them—we’ve had a ⏰ ticking since the day Lydia’s pacemaker was implanted. I walk into the surgery waiting room, stare at the benches & chairs, & think, “Ah yes. You, again.”
It is not an easy thing to send your child off behind heavy hospital doors knowing you can’t follow, no matter how capable the arms of those that carry her. That distance is so far. That pull is so agonizing. That wait is so restlessly long.
And the hospital, I have learned—speaking of the healthcare experience generally—is never easy. Never smooth. Never without heartache or trauma. No matter how simple the procedure or how short the stay, this is a place of pain first, then healing.
Five minutes after they took Lydia back, a code blue went out over the intercom. It broke me. There are unspeakable things… things you see, things you experience, things you feel. And we have. That moment hit them all. Like so many, I have a hospital past that lives in me—trauma—& while my mind knew my baby was probably ok, my body didn’t. My memories didn’t. We found a room & I collapsed. Cried. Put myself back together, while somewhere someone else worked on my daughter. And somewhere else, another team rushed to save another life.
This is the hospital. These were some of the thousand thoughts that flooded my mind in that moment. In addition to how when you’re in a hospital all that’s outside the walls fades away & you don’t care about sides you just care about LIFE & your loves & why is this the one place we can actually SEE?
Today we are home and I sat on my bed and combed Lydia’s hair while she sang to Taylor Swift. I gently pulled her strawberry strands back and noted her ears full of blood from yesterday’s surgery. My own body has been sick from the stress, but we are home and happy. We were discharged with a list of aftercare instructions, some prescriptions, some emotional bruises, and a reaffirmation of the quintessential hospital lesson: We are the lucky ones because we have each other. A little bit of pain, a lot of healing.
One Thing
Yesterday I left an examination room with my daughter feeling unseen, disrespected and discouraged. After sharing that experience with you, so many reached out to say “I get it,” “I’ve been there,” or “Keep fighting!” Your encouragement, empathy, and witness of our struggle brought tears to my eyes more than once. Thank you for seeing us.
This experience has underscored for me, again, the need we have to meet people where they are. It’s not enough to offer services once x, y, or z criteria are met. It’s not enough to provide, as one articulate friend put it yesterday, “placebo solutions” and kick the can down the road until the next appointment. It’s not enough to abandon parents to themselves to play doctor/therapist/teacher/caregiver/researcher/coordinator. IT’S NOT ENOUGH.
Meet the children where they are TODAY. Do not abandon them or offload their care to someone else because I’m telling you—there IS no one else. I know—I’m Mom and I’m currently wearing all the hats and I can tell you, it’s not working! And according to my inbox full of DMs, Lydia and I are not a one-off case. 💔 So let’s all throw those placebos in the trash where they belong and get some real solutions on the table—today. Let’s each ask ourselves, what is one way that I can meet this child WHERE THEY ARE, today. Because that’s what they really need. Maybe we can’t solve all of the problems. Maybe looking at the whole picture is too overwhelming. Trust me, I get it. But there’s always ONE TANGIBLE THING that can be done TODAY. That’s how we live over here. In baby steps and puzzle pieces. Can you imagine if I had a whole society on board contributing their one puzzle piece a day at a time? How much fuller and brighter and more complete would this girl’s future be?
One thing, where she is, today.
Broken Hearts to Mend
My little girl full of light. It’s a wonder to me that her tiny body was born with a broken heart: 3 holes and a bicuspid valve. Two surgeries and a severed electrical system now powered by machine. Medicine, men, and miracles saved her. Our lives have and always will be full of appointments for the broken-hearted. And yet, and yet… she has the strongest, purest, most fully functioning & perfect heart of anyone I know. Far healthier than mine. Far closer to God. How different the measuring sticks are for body and soul. I believe in the grand scheme of things, when Lydia was born we both received the same diagnosis: you were born with a broken heart. One physical, the other metaphysical. This is what it means to be alive. The same surgery that saved her life and set in motion her journey set in motion in new and more advanced ways her mother’s. A different heart, a different system, different holes needing mending; forever intertwined.
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.
Pictures On the Wall
The night Lydia was born, my water broke and we checked into the hospital full of all the excitement and hope common to parents who have just spent nine months (or longer, as was our case) dreaming of their child to be. During the early stages of labor, my husband and I walked the halls of the labor and delivery wing, gazing at the beautiful pictures of newborn babies that lined the walls while I pushed through contractions. “What will she look like?” we wondered, placing ourselves and our little girl in every image. “Who will she be? What beautiful love will be ours?”
As labor progressed, we left the pictures in the hall and returned to our room. The work was harder, now, but still full of hope and excitement. Once I had my epidural, there was even laughter! And then it was the final push and at last, at last! The baby girl I had been dreaming about for all my life was here!! The nurses weighed her, bundled her up, and placed her in my loving arms. But as I gazed for the first time on that beautiful face, my heart stopped. It actually filled not with hope, but fear. This beautiful, beautiful miracle rainbow baby was not the little one I had expected. She was markedly unique. As I looked on her in shock, no one around me said anything. No one even looked at us. I had to ASK, and with that asking came a sense of shame and brokenness.
There’s so much you don’t know in those first hours during and after a birth diagnosis. You don’t know, for instance, that everything will actually be ok, even though you feel like your world just fell apart. You don’t know that your heart will fill with ten (100?) times the amount of love and even thankfulness that it feels fear in that moment. I know a lot of moms regret the initial feelings and thoughts they had in that moment, but I try not to judge myself too harshly. Because it’s new, and it’s painful, and you JUST DON’T KNOW.
But the emotions are real, and they have to be dealt with. And I was not in a good state of mind when they took my baby to the NICU and took me to my room to “recover.” The first thing that greeted me when they wheeled me into my room was a large picture of a perfectly healthy, typical newborn. It seemed in that emotional moment like an affront. A brutal reminder of what then seemed like a lost ideal. “That’s not my baby,” I thought, in shock.
The whole time sweet Lydia was in the NICU I walked up and down the halls of Mom and Baby from my room to my daughter’s, passing picture after beautiful newborn picture. There were full body shots and detail shots of babies of both genders and every race. But there were no special needs babies. There were no NICU babies with monitor leads or tubes. For the first time in my life, I was part of a real minority group living in someone else’s world. And it hurt.
One of those early days, when everything seemed made of emotion and haze and time, the CEO of the hospital came to us. The hospital had recently received an email from another mother, he said. This family had also had a baby with Down syndrome, just one year before, and they too had a birth diagnosis. While the mother complimented the excellent care she and her child had received in the hospital, she mentioned that she wished for one thing: that there had been a picture of a baby with special needs on the walls. Instantly recognizing the need for change, the hospital considered buying a stock photo of a baby to hang on the wall. But then Lydia was born, and there was the opportunity to make it much more personal. “Would you mind,” he asked, “if we had a picture of your daughter taken to hang on our walls?”
Well, we cried. It’s hard to articulate what that moment and offer meant to us. It meant that our feelings were validated. It meant that even though it seemed like it, we were not alone; another family out there had walked this path, before, and they were reaching out to us in love. Most importantly, it meant that our daughter mattered. Her life was worth celebrating, too. And even being born with a disability, at just six days old she was stepping up, making a difference, and changing the world for the better. “Oh, you thought she was limited?” Heaven seemed to be saying. “No, no, Mom. Think again.”
Photo Credit: Matthew Schramer
This is the picture that now hangs in that hospital. It doesn’t match any of the other carefully posed and minutely edited images that hang alongside it. It was taken on a hospital bed surrounded by beeping monitors instead of in a studio surrounded by fluffy props. But it is real. So real. That’s my girl, and she, like so many unrepresented babies like her, is beautiful. While it is flattering that my girl is now the one whose image is on the walls, that’s not the most important part. What matters most is that these kids are represented and valued and their lives are celebrated, just like everyone else. It’s a lesson we learned early in this journey, and one I am entirely passionate about.
Through a series of miracles, I was able to befriend online (and eventually meet in person) the mother who sent the email to the hospital, and her darling, amazing girl. We’ve messaged each other almost every day since then, and they have truly welcomed us into this community and offered such love and support. We consider each other dear friends. It is amazing how God will place just the right people in your life at just the right time. That mother not only reached out to me in love in a critical moment; she also empowered me. Through her example and influence she taught me about value and love and advocacy and what being a special needs mom is all about.
This account used to be my photography account, before it got hijacked by more important things. And with this hospital photograph thing I’ve thought a lot about that. I hope, in the future, to use my voice and Lydie’s light (as well as some of her friends’ if they’ll let me) to "put these kids on the wall” as it were. Because now I know what I didn’t before: that they are beautiful not broken, and life with them is beautiful and full of hope and completely worth celebrating.
Is there a picture of a child with critical care or special needs hanging on the walls in your hospital? Write a letter. Give them a call. Let's get those kids up there.
A close friend recently delivered at our same hospital and sent me a picture of her son “meeting” Lydia.
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!
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.
The Heart of the Matter
I’ve never taken an anatomy course. English teachers don’t need that. I can diagram a sentence, but I cannot dissect the human body. I mean, I know my basic bodily systems and where major organs are located (...I think...), but ask me to distinguish between the heart’s right atrium and right ventricle and I’ll change the subject real fast. Because I know those things are there but exactly where and what they do besides just ‘make the heart work’...?? I have no idea.
Well, had no idea. Until Lydie was born.
According to one book I read, about 40-60% of people with Down syndrome have heart defects. Whatever the exact statistic is—it’s high. So checking out Lydia’s heart was one of the first things the doctors did. They couldn’t hear any murmur, and our first x-ray looked good. In all the prenatal ultrasounds with MFM, her heart looked perfectly healthy. It wasn’t until we got our first echocardiogram that we learned that Lydia does indeed have heart defects. Four of them.
First echocardiogram, five days old
When you’re in the NICU (at least in ours) and they run big tests like that it goes like this: tech comes and conducts echo on child. Tech forwards test images to off-sight cardiologist. Tech speaks with cardiologist and asks if more images are needed. Tech leaves. Cardiologist reviews images that day or maybe the next. Cardiologist sends report to hospital which is reviewed by the visiting pediatrician who then conveys the information to the parents. This is all to say we 1) had to wait for the results and 2) got the results through a pediatrician reporting the cardiologist’s findings. Which makes it hard to ask questions and get detailed answers.
Dan wasn’t there when the pediatrician came to tell me the results of the echo. Wish he had been, since Dan HAS taken anatomy and probably could have explained it all to me. As it was, the soft-spoken pediatrician gently wrote down a list of conditions they had found, and when I looked confused drew a diagram for me. I recognized a few terms: “bicuspid valve” and “defect” being the primary ones. I knew what we were talking about was a big deal, but the pediatrician also said things like, “shouldn’t cause an immediate problem,” and “could fix itself over time.” So in my naïveté, I wasn’t as concerned initially as I perhaps should have been. Plus we were literally on our way out the door to have Lydia’s pictures taken for the hospital (more on that later), and I was running on the classic new mom quota of zero sleep, so my mind was a scattered mess. I’ve learned that it takes my uneducated self a couple exposures to medical information before I GET it. I’ve also learned to ask a lot of questions, take notes, and google the heck out of medical terms.
Anyway. With three echos, an EKG, an x-ray and a dozen exams in the books, this is what we know. Lydia has a bicuspid aortic valve, a VSD (hole between two ventricles), an ASD (hole between two atria), and an open PDA (tube that should have closed right after birth). She will need open heart surgery, and we are planning on that occurring sometime this summer.
It is a major blow and continues to be an enormous source of stress for me. Once again this is not the way things were supposed to go and is something you would never want your child to have to face, but here we are.
Having said that, the surgical procedures that they will perform on her are very common and straightforward, and we have access to an outstanding children’s hospital and surgeons, for which I am grateful.
It’s just open heart surgery. On my baby.
I wish I could leave you with a peppy, optimistic view of the thing, but it all weighs pretty heavily sometimes. Not all blogs have to have a moral, right? Especially the kind of blog that is unfolding in real time as you learn to deal with life and that you write so people can know what you’re going through but you don’t have to experience the pain of explaining it a million times?
Having said that, the prognosis is quite positive and the doctors tell me that once she has the surgery, she will likely lead a normal, active life. Her heart condition does affect a number of things right now—primarily energy levels and her ability to eat/gain weight, but we’re working through it. I will be glad once we have the procedure done and it can help her.
The last two months have tested me beyond anything I ever imagined. Things I never considered happening in my life plan are now realities. I’m not a natural crier, but I tear up more than usual. I eat ridiculous amounts of dark chocolate. I pray, I study, I call my mom, I avoid awkward conversations with strangers (and sometimes anyone), and I crash in bed at night. Sometimes there is so much to feel that I just don’t feel anything.
But I also sit and hold my baby and stroke her soft head and force feed her a million times a day so she can gain weight and just try to take it one day at a time and be grateful that we have her. Because she’s the sweetest, her smile is adorable, and her snuggles fill my heart. Sometimes when she’s sleeping I stare at her long eyelashes, analyze the red tint to her hair, or just listen to her breathe. In those moments I do feel. In those moments there’s joy and even peace.
