I used to think I had a general idea of how to go at life. I mean, you never feel like you have it totally under control, but you more or less have a routine and philosophy of sorts. Maybe you even have some prideful (intentionally or not), subconscious considerations about “how things are supposed to go.” But now, lately, I don’t know. There are still definite truths that anchor me, and thank goodness, but there’s also more flexibility and forgiveness within those truths. I feel inclined to say less. To judge zero. To look my fellow humans in the eye in passing and say, “Hey. You’re here and I’m here and we’re still going at it. GO, US.” And that’s all.
Tunnels
I haven’t been sleeping well. And by that I mean I haven’t been sleeping hardly at all. We’re still on somewhat of a feeding schedule over here, so there’s that, but even more I wake up multiple times in the night to frantically look at the glowing numbers on our pulse oximeter which tell me how fast Lydia’s heart is beating and whether she’s getting enough oxygen. Then I usually get out of bed to see if the cannula is in her nose because she’s ALWAYS pulling it out, despite our best efforts to prevent that. Backstory I didn’t tell you: We weaned her completely off the oxygen in the hospital, actually, but she crashed hard. It wasn’t something the monitors could tell us was happening. My mom gut + the Spirit kept persistently telling me things weren’t right with some symptoms she was having, even though, as the Drs repeated multiple times, “Her numbers look good!” They ordered an echo “if it will make you feel better,” and it was that extra follow up echo which showed what the monitors couldn’t: that she had crazy high pulmonary hypertension that needed to be treated immediately with oxygen and medication. So, now we’ve been home a month and while it’s gotten better, I still don’t sleep. Because the mom stress is real. This is all just to say that it’s hard. Having a child with critical care needs is hard, although I wouldn’t trade her for anything in the world.
So this is a “here’s to the light at the end of the tunnel” kind of pic. Because creating pretty things is my safe/happy place. And because remembering to trust the light and count the blessings while walking in the dark is everything.
Lessons
You teach me so many things. To take one day at a time. To not compare. To celebrate every victory and to shake off the bad days. To keep moving forward. To have courage and be kind. To see and appreciate everyone. To give love freely and abundantly. What exercising faith means. I could go on and on. And these aren’t trite, lip service lessons. No, we’re in the college level course. You amaze me and make me better. That’s all. #misslydiefaith#theluckyfew
FACE!
In case you ever take seeing your kid’s whole beautiful face for granted... don’t. 😍 #misslydiefaith#betweencannulas #goals
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. ❤️
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.
Out
Out and about at the park. We’ve got a whole summer to make up for! 😘
HOME
Don’t look now, but... We are home! 🙏🏻🙏🏻❤️❤️ It’s all still a work in progress. Her blood pressure is still high and she is home on oxygen and medication for that. We are PRAYING that it improves dramatically instead of being a long term issue. We still have to be careful about keeping her healthy especially going into winter. I probably won’t take her to church and they said if I have a choice to leave her home or take her to the store to leave her home. BUT, we are progressing in the right direction 🙏🏻🙏🏻🙏🏻 Our lives have been off kilter and survival based for 6 months. I’m sure it will take some time to ease back into normal (and having the kids live with Mom instead of grandmas... 😳😂). But we are so excited and grateful to be together, again. 🙏🏻❤️🙏🏻 #misslydiefaith #heartwarrior #theluckyfew
The Scars We Wear
Sorry for this picture, guys. But that’s a whole lot of stitches in one little girl. Two surgeries; two major scars. They went through the top twice, and that bottom one is from when they placed her pacemaker.When we redressed her incisions, yesterday (they have cute pink bandaids, now), I started thinking, again, about the scars this little one will carry all her life and the stories they tell. Stories of bravery and innocence and perseverance and meekness and trust. I am so proud of all that she has overcome. I am starting to realize that she is not the only one who will carry scars from this. Many of those of us who love her best have felt things right alongside her. Personally, for every cut and stitch and poke in her body, my heart got one of its own. Some are super painful and will take a while to heal. They’ll all close up, but the marks will remain for both of us. Pretty sure that both of us have had our insides reorganized and rearranged. We’re both a lot better off for it, and neither one of us will ever, ever be the same. She’s a warrior, a survivor, a champion. And me? I’m a special needs mom. #misslydiefaith #heartwarrior #theluckyfew
Resilience
Two major heart surgeries in 9 days and smiling to beat the band. I want to be like her when I grow up. We are the luckiest.☀️💗 #misslydiefaith #heartwarrior #theluckyfew
Pacemaker Post-op
That, my friends, is the BEAUTIFUL face of a post op, extubated, no more ng tube, fully functional and installed battery operated Wonder Woman! 😍😍😍 Surgery went very well, today. She is recovering well also. We are SO glad to have “the operation” (x2) behind us with healing ahead. ❤️🙏🏻 Thank you for the prayers and support you have given and continue to give. You can never know what it has meant to us. God is good.Now if you’ll just excuse me, I’m going to go cuddle her for the rest of my life. 💗
#misslydiefaith #heartwarrior #openheartsurgery #theluckyfew
Malfunction
Today Lydie’s temporary external pacer malfunctioned. Actually, a wire connecting the pacemaker to her heart broke. Which never happens. She started turning purple and the room filled with doctors trying to figure out what was wrong. In an emergency moment, they had to sew a wire through her stomach skin to get the device working, again, without numbing or sedation of any kind. There were tears from baby and tears and panic from Mom. They were able to get the pacemaker functioning and disconnected the broken wire. Then they gave her alllllll the drugs and did an EKG, then she fell asleep in my arms and we did not move for 3 hrs. Except all the times she woke up and put her hand on my face to make sure I was still there.
Surgery to put in a pacemaker is scheduled for tomorrow. Please pray that it goes smoothly with no complications or infections. And that she is blessed with emotional resilience after all of this. We love our girl so much and today were reminded more than ever what a miracle she is.
#misslydiefaith#heartwarrior
Smile
When you haven’t seen that smile for seven days and then it suddenly shows up again? Best. Day. Ever. 😍 #sheback #misslydiefaith #heartwarrior #openheartsurgery #theluckyfew
Family Time & Some Updates
Events of the day:
- Everybody who could apologized to me for yesterday. Which I very very much appreciated. Together we set more realistic goals and today was MILES better!
- We got that wretched central line out of her neck! Yay! Which means she is a lot more comfortable I think. Because her heart is being paced by an external pacemaker we HAVE to have IV access in case anything happens, so the IV team came today and brought the best of their best and got an IV in her arm. It came out two hrs later 😭 but they were able to place a deeper/more dependable (we hope) one that will hopefully last as long as we need it!
- We snuggled. This girl needs love like she needs air to breathe. Her eyes the first time I held her (see two posts ago) just PIERCED me. I am convinced that being loved by Mom is literally a critical part of her care. So we’re prioritizing that. Lucky me! 💗
- She ate really really well today! Gradually stepping up the amounts. And it doesn’t take an hr and a half!!!!
- She started vocalizing more!! My Lydie girl is super social and communicative and I am so glad she is starting to want to talk. When I start seeing those giant smiles again every five seconds then I’ll know she’s really back. 😊
- The boys came!!! Oh I miss those little men! And they miss me. It felt so so SO good to be together today. We had lunch and played foosball and ate treats and they played for hours in the kid zone. It was a much needed, good, family day. When we said goodbye, they kissed me all over my face (including behind my ears 😂), and blew kisses and called goodbyes until after they went around the corner and I was still waving at them from behind locked ICU doors. ❤️ This is killer, but the glue that holds us all together physically and emotionally is love. And prayer. 💗 And we’re making it. Almost there. 💪🏻 Thank you for all the love and prayers and comments & messages! I don’t always have time to respond right now, but they lift me more than you know. 💕
Advocate
It was a hard day. In five hours, we had visits from feeding therapy, PT, OT, Child Life (the one thing I requested), a failed IV placement and removal of the central line, a feeding tube replacement, and a painful post-op echo. Some things were necessary; others were just trying to check us off their list before the weekend. Early in the day as person after person showed up, I knew we were trying too much, and started turning people away. After the failed IVs, I asked for the echo date to be moved but was told that it could not be rescheduled. When they attempted to do the echo, the sympathetic tech and I were equally frustrated that, even with oxycodone and Tylenol and sweeties (sugar drops) and a binky AND music, Lydia was writhing and in pain and upset. The kind tech, on her own, mentioned that the echo should have been rescheduled for a better time for us as she was unable to get many images and the ones she got were poor quality. Lydia was distressed and in pain and I was mad.
Today I fought the Mom battle and it was hard. I fought to learn and understand and be heard and understood. But hard and frustrating as that was, it was nothing to Lydie’s fight. I saw the gamut in her, today: pain and fear; effort, failures, and triumph; exhaustion and peace and love. She is such a brave, special girl. She truly inspires me.
Finally we were heard. Finally changes were made. Finally I got to hold her, twice, and both times she sunk into peaceful sleep in my arms while heaven healed us both. ❤️ #misslydiefaith#heartwarrior#theluckyfew
No Words
Progress, Incision, and Complications
Today has been busy! Lydie had her chest tube (drain), a monitoring strip, her arterial line, and a foot & hand IV removed!! She’s starting to look like my baby, again!! ☺️With one new addition... We got our first look at the incision, today. 😬💔💪🏻 Oh, my mama heart. Oh, her real heart!
Other happy news: She started drinking from a bottle again, although we still have the feeding tube for backup (and meds) if we need it. And soon I get to hold her!!! We are cruising!
Would it surprise you, then, to know that we are committed to the ICU for another week at least? We are 😞
Let me explain. Lydia had multiple repairs made, but there were some structural complications we didn’t know about (even with 5 million echos) that the surgeon found when he got in there. So he had to improvise a little. Thankfully we have an AMAZING surgeon with tons of experience. He was able to make the repairs, but Lydia is now in what is called “heart block.” Her chambers aren’t talking to each other, so her heart is not beating in a coordinated way. This could be because her heart is stunned or swollen or damaged from all the work done. This may or may not improve. The surgeon was really surprised because he thought he had missed areas that would cause this, but again, she’s a complicated case. SO. We have one week, which is how long it takes for most heart block cases that are going to self-correct to do so. And many do. If it does not heal and start beating in sync, in one week they will go back in and place a pacemaker. Which yes, means another surgery through the same incision.
That’s where we sit. We are obviously hoping and praying so so hard that her heart will recover and beat normally. But, if it doesn’t, she will have a pacemaker which shouldn’t affect her quality of life. We’re grateful that we live in a time when these kinds of miracles like massive repairs and pacemakers are even possible!! We’re just also hoping that there’s one more huge miracle waiting around the corner for this girl. 🙏🏻🙏🏻🙏🏻 #misslydiefaith#heartwarrior
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 🙄❤️
Open Heart Surgery Day
Well, miracle of miracles we made it. I am still a little under the weather but steadily getting better. Maybe 87%? 😂🙏🏻🙏🏻 Amazingly Lydia is healthy and cleared for surgery. After a rather nervous day yesterday we finally got some sleep and made it to the hospital for check in before 6:00 AM. Back in the pre-op area we dressed Lydia in her gown and giant pants after swabbing her down with a second round of “kill all the things” wipes (first round was last night). We met with the surgeon, Dan for the second time and me for the first. He is an extremely talented man with an excellent reputation. Hearing the rundown & risks from THE man himself was sobering, as I’m sure he could tell from my huge eyes. Then a couple of nurses stopped by to evaluate Lydie and finally the anesthesiologist came to talk us through things and walk us down the hall. He was sweet and reassuring and I felt ok handing my baby girl over to him at 7:35. It wasn’t like just one moment of hand off for me as much as a thousand little moments all morning. All weekend. My heart is on that table with her.
We can feel the prayers and God’s love lifting us and bringing peace that truly “passes all understanding.” I’m sure there are angels with us all.
The surgery is scheduled to last 5 hrs. Send all the prayers. 🙏🏻🙏🏻🙏🏻❤️
