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. 🙏🏻🙏🏻🙏🏻❤️
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!
Pre-Op
Well, it’s been a crazy week over here. We’ve been running around doing all the last minute pre-op stuff and dodging curve balls, besides.
On Tuesday, I took Lydie in to her pediatric cardiologist for our last visit before surgery. I really appreciate her cardiologist; he always answers all my questions in a way that I can understand, and he respects my opinions. Having said that, cardiology days are always hard because they are so dang long. Appointments can take up to four hours and inevitably everybody is hungry and tired by the end of it! I was ready this time with two bottles in reserve and I did NOT forget the binkie for the echo (unlike last time). True to form, though, we only got just over one ounce of food in baby girl before we had to leave. It’s like she knows when the pressure is on and will not be rushed. Dah! So I pretended like that wasn’t frustrating or going to haunt us later in the day (it DID) as we tried to make quota, and headed out the door.
The appointment itself went really well and miracle of miracles we didn’t have to do another echo!! First time, ever I believe! So we got to leave early—wahoo!! But before that we did an EKG. This test involves placing 13 sticky sensor pads on her chest and then hooking them up to wires which just measure how fast her heart beats and how well it conducts electrical energy. It doesn’t hurt at all and putting the stickers/wires on takes way longer than the actual test, which only lasts about 60 seconds. Here’s my girl all suited up:
After that the doctor reviewed the results, listened to her really well, and answered my questions about surgery. Day one of pre-op stuff in the books! Back at home we continued the feeding battle and it did not go well. Some days are like that, but this one was on track to set a record. We had gotten 7 ounces in her by the time it was time to start her last feeding. We’re supposed to be getting a minimum of 15. She’s supposed to be gaining weight and staying healthy for surgery. I was in despair. So we prayed really hard and got in 3 more ounces which landed us at 10 (my bottom level intake limit) for the day because God is good. 🙏🏻
Then Wednesday came. I woke up not feeling so hot. I’d had a sore throat for like 6 weeks that we couldn’t pin down or get rid of and the doctor at the instacare had prescribed sleep 😂😂😂 Right. But Wednesday morning that sore throat showed up with a vengeance and took me down. Back at the instacare they told me I was running a fever and tested me for strep and mono (second test for that). And I panicked. Because my baby is scheduled for open heart surgery in FIVE days, she cannot get sick, and Mom is sick & contagious. NIGHTMARE!!!!!!
Dad to the rescue. Bless his heart. I called Dan and told him I needed him now and ps cancel all your plans and important work things because we are in EMERGENCY MODE. He did. He came and took over while I vacated the house and fled to my mom’s where for three horribly long and stressful days all I did was eat and sleep and panic over not being there for my daughter.
It. was. agonizing.
After a lot of prayer, a priesthood blessing, a lot of forced sleep and all the healthy food I could find... I was able to come home to my girl on Saturday feeling like a human again. 🙏🏻😭🙏🏻
While I was out, Dan got NO sleep, went to zero days at work, and took Lydie to her pre-op hospital labs/x-ray/meet the surgeon meeting.
Here’s a picture of our warrior after she had her blood drawn—which is no small task on such a small person with blood as thick as mud.
It was rough for all involved. And for Mom who was purposefully uninvolved. 💔💔💔
So here we are. It’s Saturday night. I am home and although I feel good I’m keeping my distance & wearing a face mask. Dan is doing the Lydie stuff and I went grocery shopping. But we are all here, alive, healthy 🤞🏻, and together.
I don’t know, guys. Is this happening? Are we going to make it?!!! Please say yes, because I can’t go through this circus multiple times!
On Prayer
I am sitting here next to my girl, thinking about all the love that we have felt from so many, today. Her surgery is scheduled for one week from tomorrow. It has been THE big event looming on the horizon for the whole five and a half months she has been with us. I can't believe it's actually almost here.
I could not have anticipated six months ago what was coming down the pike for us--what this girl would bring and how knowing her would change our lives. I think that anytime you have a child you know your life will be forever different, but man--I feel like a completely different person than I was six months ago.
Lydia's birth diagnosis of Down syndrome was a surprise. Six days later, the results of her echocardiogram came back and we learned that she had four congenital heart defects. It was a lot of life-changing information to swallow in one week! (I'm still swallowing...) Introducing us to an entirely new medical world is not the only way knowing Lydia has changed us, however. It goes a lot deeper than that; beyond a diagnosis, a procedure, a label. My eyes are changed. My perspective has changed. My heart is changing. I am not the same. None of us whose hearts have been touched by her are.
But change can be hard. I have actually wondered why they didn't treat me for shock at the hospital, haha. Surely I qualified! Wasn't someone supposed to elevate my feet and put a foil blanket around my shoulders?? 😂 Maybe they were watching for signs all along and I just didn't know it. The point is, you don't have an experience like that and just get through it. It takes a million mighty miracles every moment of every day to even begin to cope. You cannot do it alone. Enter, prayer.
I have never felt the power of prayer like I have the last five months. People will often say to us, "You are in our thoughts and prayers, of course, but what can we DO?" As if prayer were a minor detail tacked onto our lives but inadequate to express our real desires to love and serve; maybe even sometimes considered such a little thing, or the easy way out. I am here to tell you--to shout it from the rooftops and shake you by the shoulders if I have to--that your prayers are the single most important thing you could ever give us. You could send me on a cruise and I would shout from the balcony as we sailed away, "Thank you! But please, please pray for Lydie!!"
The meals are wonderful. The notes fill our hearts and bring tears to our eyes. Each act of service is a needed miracle in its own right. But the prayers--the prayers carry us.
I have felt the Lord lifting me in numerous ways the last few months. I know my weaknesses. I know my own capabilities. I KNOW that I could not do what I have been asked to do without divine aid making up the difference. There are lifelong physical and emotional challenges that have caused many problems before under times of much less stress that have, in this hour of great need, been held at bay. And I know it is not just a case of adrenaline or digging down deep and gutting it out for my daughter. As just one example: if you know me, you know that I have severe migraines. Two of my biggest triggers are stress and lack of sleep. In earlier times these migraines have required extensive tests and doctor visits and medications. But here I am, running on the least amount of sleep I have ever had in my life, under the most stress I have ever experienced, for the longest duration of time, and the migraines are almost a non-issue. That is a miracle. And that is just one example of the miraculous sustaining power we have received as a direct result, I believe, of so many loving prayers and God's merciful love.
You can never know all the challenges and dark moments and struggles anyone faces, or the ones that we have faced in recent months. Some of these issues (Dan finding a job, for one) have been big big things that just happened to occur at the same time we are trying to help Lydia. Some of them have been dark and desperate personal moments to fight through. And then there are the thousand and one very real and present physical challenges Lydia has faced, herself. But while you may never know all the exact, minute details, please know this: your prayers in our behalf and hers have been heard and answered a hundred thousand times. God is with us all day long when we let Him in.
Please know that your prayers, as your acts of service, are not casual. We feel them, sometimes literally. We know that God hears them because we have witnessed Him answering them. I believe in the power of prayer more now than ever before in my life. We are so grateful for the many friends who have shared so very much with us--especially their heartfelt prayers, and for a loving Heavenly Father who hears our cries (whether public or personal) and runs to our aid.
Thank you. I don’t think we could do anything to deserve such love. Although it is humbling to ask, please keep praying. And know that we pray for you, too.
Letter
Dear Son,
Do you remember the night we all got out of the house and ran to the park to play for 5 minutes before it rained? Maybe it wasn’t a big deal to you—just one of a hundred times you’ve climbed any number of trees this summer—but it was a big deal to me. It was a big deal because I was there. Someday I hope you’ll understand why this summer was so different; why your grandmas took turns taking you to their houses every day while Mom stayed home with your sister. Why I missed the first time you rode your bike without training wheels and the Fourth of July program you were in with your cousins. Why I couldn’t join you on your hikes or your picnics or your trips to the splash pad. I hope you know how much I’ve missed you. And that even though I have seemed like a grumpy, exhausted, mostly absent mom, I have loved the texts about funny things you’ve said, and the videos I have received of all your adventures. I hope you know that every day when you walked out the door hollering, “Bye, Mom! Hope you have a fun time, Mom! Miss you a lot, Mom!” my heart went with you, and that every time you gave me a kiss and a hug before bed I savored it more than I can ever say. I hope you know that this summer apart has highlighted just how precious these fleeting days with you are, and how much I long and plan to be there for every future one of them we have left.
Love, Mom
Keepin’ On
Popping in with an old favorite because it fits my mood these days. 🤣 We’re just hangin’ out, hangin’ on, waiting for surgery. Baby girl has had more good days than bad the last week (KNOCK ON ALL THE WOOD) and she is up to 12 lbs which I really never thought would happen before surgery so wahoo! Prayers! While there have been a couple scary moments/long nights, she’s come through them. Her little personality comes out more and more each day. I wish you all could see her grins in person because they are the best and light up our souls. The boys are a little afraid of this surgery thing coming up. We’re doing our best to keep it positive and not dwell on the scary stuff. Dan is continuing to hold down the sanity fort while my hair is literally still falling out... but maybe a little bit less? Haha. Speaking of hair, I got mine done for the first time in 18 mo because #selfcare. Also, online shopping. Saving grace or terrible addiction? 🤔 Trying, trying, trying to balance all the things and maintain a good perspective. Been into audiobooks during the endless feedings and have really enjoyed The Gratitude Diaries, Live Happy, and the sermons of Jeffrey R Holland online. Recommend them all. So, we’re hanging in there! Keep on keepin’ on. 💪🏻 Thank you for the love and prayers.
My Girl
Isn’t she beautiful?!! I know that to some, this might just be someone else’s baby; but that’s a piece of my heart looking back at me right there. And she is special.
They called to schedule her surgery, today. And I said “Yes.” Yes, we will sign up for this. Yes, you can have that date during the second week of August. Yes, that’s when I will hand her over, you can take her behind closed doors, and I will pray the most earnest prayers I’ve ever prayed in my life. Motherhood seems a little too real and a little too heavy, today. A little too much like it’s hard to breathe. Still, I know I don’t carry the burden alone. There are many who love us, and I become increasingly aware of what it means to hand my whole heart over to God and trust that He can and will do what is best for His children (and mine). It’s just so hard to let go.
Crazy July
I am a messy work in progress.
And so is my life... which this week included a trip to the ER, a trip to the cardiologist, family pictures, a baby blessing, and the go-ahead to get this dang surgery scheduled (date TBD). Also, I heard it was the Fourth of July? It’s cool. I’m fine. I’m fine! 🤪🤷🏼♀️😂😵 #wewillsurvive #butwillwe? #Imlosingallmyhair
Lydie Update:
She is now 4.5 mo old and weighs 11 lb 11 oz. She eats like a bird (a very slow bird) but thanks to the high calorie meals we keep gaining ounces one by one! We BARELY escaped a feeding tube again this week. If you’re wondering why we’re fighting that so hard, it’s because children can become dependent on feeding tubes and develop oral aversion—they can either disassociate hunger and swallowing or may not want to eat orally after being fed by tube. And, since muscle development is slow in kids with DS anyway, we are doing EVERYTHING we can to keep those oral skills in place, which will help with eating/speech later on! So the 90 min meals continue 💪🏻 Another new development is that she is reaching for everything which is so fun!
She also works on her (assisted) sit ups and core strength daily (see stories) so this girl’s on quite the regimen! The last 2 pics are from our cardiology appointment on Monday. She got blood work and her pre-op echo done, and we are just waiting on the hospital now to schedule surgery. Half exciting, half terrifying, 100% surreal. Just soaking her up and trying not to think about it too much. ❤️
As a Child
She can’t eat or breathe very well and yesterday she got some vaccines so she’s running a fever, but she’s been grinning and laughing at me all day. Oh what are all the lessons you have to teach me, Baby Girl?! Life sure is beautiful with you.
Update
Through the pack n play. *** We’re doing okay over here. We narrowly escaped getting a feeding tube last week. We see the pediatrician again on Monday, so here’s hoping we make weight, again! She’s been eating pretty well, so I am optimistic. Every day is another day older/bigger before surgery. Also, she was full on laughing at Daddy, today, and we all died. Love this girl.