July 19, 2017

Heart Surgery Recovery


As soon as we shared our news that our eldest daughter, L, had two congenital heart defects and would need open heart bypass surgery people have been awesome. Like "The Body of Christ can move mountains" awesome. Like every dot, flower, and thorn painted with the Sacred and Immaculate Hearts above represents a prayer, a sacrifice, a rosary, a Mass offered up for my daughter, and those are only the ones that were submitted online. But every time we take a long look at that painting I am overwhelmed by the goodness of others and the way God is glorified by your works. 




The first Tuesday night in May Resa, L, and I sat around our dining room table with L's godmother, Katie, making invitations to their angel penguin birthday party. The next morning, with invites in the mail, I was sitting at my weekly moms' group when I got the phone call from the pediatric cardiologist's scheduler: there was an opening for surgery a week from Thursday. Did we want L to get it? We wanted L's surgery to happen before my c-section so we said Yes and then our life changed gears super fast.

All the potential party-goers were contacted and told that the birthday party would not be later in the month but in three days. The school, whose principal had already said L's last day could be whenever we needed it to be, was told that her last day would be in a week. We made arrangements for L to receive Anointing of the Sick before the surgery, for someone to be with our other kids, for Travis to be off work, for all our "i"s to be dotted and our "t"s crossed. 

The morning of L's surgery everyone got up early and headed to the 7am Mass. We had been given special permission for L to receive a very teeny tiny bit of Holy Communion. Fr. Julius prayed for L  at Mass and asked everyone present to pray for her throughout the day. In fact, a friend of our's had arranged with our priests for there to be all day adoration with a special request for people to pray for L. Parishioners would be at our church until 7pm praying for L and during the school day each grade took a turn before the Blessed Sacrament to pray for our daughter. 


Immediately after Mass our family headed over to the parish school and waited in the gym. Our pastor had arranged with the principal for there to be an all-school assembly immediately following Morning Announcements so that the whole school would be part of the prayers offered during L's reception of the Anointing of the Sick. It was awesome. Our family stood with her on that gymnasium floor as Fr. Julius administered the Sacrament. 


We then headed over to the Children's Hospital of Illinois, Travis, L, and me. From the tremendous outpouring on the blog, Facebook, and Instagram we knew that people were praying for us all over the country and world, and when combined with the powerful experiences at our parish we knew that we were being absolutely covered in prayer and graces. We were afraid and anxious but I can say with confidence that those prayers helped to bring us peace and calm our concerns. We were bowled-over by how many had pledged their prayers and we walked into the hospital knowing that you all were with us as we went.  


Some of Travis' students had made a special blanket for L when they heard about her surgery and as she waited for her surgery she wrapped herself in it. It was covered with hearts, the symbol of love, and anchors, the symbol of hope. I loved it. 

As we waited in the pre-op area we were again blessed in a special way. The hospital is a Catholic one, and in more than name only. The people who update loved ones throughout the operation process are from the chaplain's office. The man who just happened to be assigned to us is also a deacon at our parish's sister parish. He was able to give us a special blessing and as he prayed over us the nurse stopped what she was doing to pray with us, crossing herself when we were done.

After waiting for about an hour, playing Uno and chatting the whole time, it was finally time to go. Different doctors and nurses and specialists had come and gone the whole time, each chatting with L and reassuring us as they explained everything that was going to happen. When it was time for her to head to the OR she gave us hugs and kisses and she walked away from us, hair in a cover, love and hope wrapped around her, Cozy Heart Penguin in her arms, and a smile on her face. 

Travis and I went to the waiting room, getting updates along the way. The worst 
was when the deacon called us to let us know that L was on the bypass machine - meaning her heart was no longer beating. Crazy and horrible and amazing and terrifying, if you can imagine.

Surgery went incredibly well and they finished in just under two hours. We were walked up to the PICU (peds intensive care unit) but had to wait for a bit longer than expected to see her because she was having such a hard time coming out of the anesthesia. When the surgeons finally came out to talk to us they explained how happy they were with how the surgery had gone - they were able to use the hole in her heart as a short-cut to thread her veins through so it could finally be attached in the correct place. They used part of her heart sac to plug the rest of it up and ... all's well that ends well. But it's also just craaaaaaazy.

That first day was pretty tough. As she fought to come out of the anesthesia she was in a lot of pain and incredibly confused. At one point she yelled out, "Help me, Daddy!" and it was literally one of the worst moments of our lives because there was nothing we could do to help our baby girl. There was a chest tube to make sure fluid didn't collect around her heart, but it was what caused her the most pain and discomfort. She threw up several times because of it - can you imagine how painful that would be with a broken sternum?! 

But the nurses were rock stars. They took such great care of her and did everything in their means to make her comfortable. The whole cardiology team was just amazing and we were so grateful to be at one of the best children's hospitals in the country - just 20 minutes from our home. 

Over the next few days she napped. Once they removed her chest tube (and the pace maker wires) she started to feel much better. She moved from her bed to the chair, then her bed to the bathroom, then from her bed all the way down to the other end of the floor and then out to the roof-top garden. She rested there, then walked almost the whole way back until the nurse insisted that she ride in a wheelchair the rest of the way. It was twenty-four hours after her open heart surgery! The nurses said it was the longest walk they'd ever seen in a patient at that state in the game. Eventually she regained an appetite. I read aloud to her and we watched the live action Cinderella. Her uncles visited, along with her godmother and grandmother, mormor and grandpa.

I love this picture of me, 9 months pregnant, brushing L's hair for her and putting it up in a bun as she requested. She was so worn out she fell asleep while I was doing it, but it was so good to have something tangible I could do for her. 

Our sleeping beauty.

L, resting in the roof-top garden. She's wearing her super hero shirt, a gift from Trav's co-workers. 

Saturday morning breakfast.


Sunday, Mother's Day, L was given clearance to come home. After the surgery she had to cough a lot, clearing her chest, and her Cozy Heart Penguin - a birthday gift from her Mormor - was her go-to object to hug during the coughing. It was also used to soften the feel of the seat belt against her incision. 

We couldn't believe that just three days after having open heart surgery she could come home! As soon as we arrived at our house the very first thing she asked to do was go outside and sit on the swing. Once again: crazy. 

Early on L had a lot of limitations. She mostly napped that first post-op week, took pain meds, and was sore. Many people gifted her with books and crafty things and so she colored, molded, sketched, created, and read. Since she could not lift anything over 5lbs, be in public, or do anything that might lead to a fall she could not run, dance, skip, do stairs, ride her bike, swing high, use the slide, climb anything, attend school or Mass, and so on. But a friend from church dropped off the hula hoops her daughters used to play with - 20 some years ago! - and L became a master hooper! Thank God - literally - that Chris was moved to bring those hula hoops over because they were *just* what L needed - something physical, something new to master, and something that was allowed by the surgeons. Several times a day she'd walk around our house, hooping as she went. She'd hula hoop for minutes - over 8 minutes straight once - and even do the chicken dance while hooping! 



With special permission from her doctors L was able to attend the last day of school, two weeks post-op. As a family we went to the all school Mass and she got to sit with her class, though she had to wear a face mask and she carried her cough-buddy penguin. As a special treat she made heart-shaped sugar cookies for her classmates, which she and her daddy took to her class after the Mass. She chatted with her friends and was able to thank them for their prayers. 

At this point L is able to swim, slide, swing, run (with shoes - no flip flops!), and do most of her usual activities. She cannot roller skate, ride her bike, climb trees, or play contact sports until November (so that her sternum is not re-broken) but otherwise she is free to live her life. One of the beautiful things about this time is that L has really fallen in love with reading. In the past the only books she really read were the Junie B. Jones series but now she's been plowing through the Lemony Snicket books, has started the Narnia books, and has read The Secret Garden, Anne of Green Gables, and a few others along the way. 

Over and over again I have said that how well L is doing is a testament to the power of prayer and modern medicine. To everyone who sent money or gift cards or presents or prayers: thank you! Our family was so well cared-for during those difficult hours, days, and weeks and we are so grateful. Learning that L had heart issues was terrifying and we were so scared about the surgery. I admit I was angry at God for giving us another hardship to endure. But on this side of it I also have to admit that we had it easy. L had one surgery, it went well, her incision has healed well, and she has a 99.9% chance of going on and living a normal, healthy life - free to do whatever she wishes - once her body is completely healed. So many heart kids have repeated surgeries and they and their families truly are suffering for a long, long time. We had a community of loved ones supporting us. We were blanketed in prayers. Our daughter is healthy and alive. We are so fortunate and honestly, looking back at the tantrums I threw in prayer I am embarrassed. We've had it so easy. May God comfort and restore those who have not. 

And once again I very sincerely want to say Thank You to everyone who has prayed for us, cared for us, and gifted something to us. I am slowly working on sending out Thank You cards and I'm really hoping that in the chaos that was our life we didn't leave any of the gifts off our record log. Please know that we are so grateful - to God and to you. 

Spiritual bouquet embroidered by Jenna from Call Her Happy




July 10, 2017

Back to School Shopping

Hey folks, this is a shameless invitation for you to use my Amazon affiliate link tomorrow, July 11th for all your Prime Day shopping.

Our school has already sent out the supply list and so if yours has, too then tomorrow might just be a great day to get your kids' book bags, notebooks, crayons, uniforms, and more.

Here's the link one more time.

Thank you! Really. The Amazon credit helps fill in so many cracks in our family's budget.





June 7, 2017

A Happy Announcement




Some of you may have been wondering and some of you even guessed and now this is the announcement some of you even asked about.

We are incredibly happy and give thanks for this gift.

And now if you have some prayer intentions please send them my way because I have some discomfort I can offer up for you.

May 5, 2017

The Surprise Open Heart Surgery

I'm going to start this with the ending and you can read the middle if you want: on Thursday the 11th our first born will be having open heart bypass surgery. This is not an emergency but has all come about very quickly and we are scared. Your prayers are very much appreciated. 



Last summer our eight year old daughter, L - our eldest, would be playing in the back yard. She'd race her siblings, climb the maple tree, roller skate, ride her bike, jump on the trampoline, crash through the sprinkler and then she would come up to us and say, "My heart is pounding and I'm out of breath!" Like the low-key, good parents that we are, we would say, "That's because you're playing hard. Sit down, drink some water, and rest for a bit." She would and in a bit she'd feel better and get back up to play some more.

Over the winter, though, she would cross a room and tell us that her heart was pounding; we even noticed that we could actually see it pound through her clothes. So in early March I took her to our family doctor. I mentioned that years ago his former colleague and our former doctor had heard a murmur, which no one ever heard again. He listened to her explain everything, checked her over, listened to her heart, and said he thought it was probably nothing but would send her for some tests just to rule everything out.

So the last Wednesday in March Travis took her to the hospital for a couple of tests. We thought it would be nothing. We didn't even really tell very many people because we didn't want to make a big deal out of it. We weren't worried - why should anyone else?

And that Wednesday night I missed a call from the doctor, who then left a voicemail saying, "Your daughter has a heart defect and her heart is enlarged. Call me tomorrow." And then we did the stupidest thing possible: we googled "heart defect, enlarged heart." And everything told us that our daughter would die. Travis took our second class relic of Fulton Sheen, laid it on our sleeping girl's chest, and prayed for a miracle. When we went to bed that night, holding on to one another and crying, we pleaded with God to not let her die but wondered how long we would have until she did.

The next day I spoke with our doctor and his nurse who gave us better news. L had a hole in her heart and the right side of her heart was enlarged because it had been working so hard. She would be going to a pediatric cardiologist but he did not believe that this was life threatening. Stupid Google and stupid us for stupidly putting ourselves through that. But that night Travis again took the relic and laid it on our daughter's heart and asked Fulton Sheen to pray for her healing.

That first week of April we went to the Children's Hospital of Illinois to meet with the cardiologist. Immediately the doctors could hear the murmur and just by sight and feel they could tell that the right side of her rib cage was bigger because of her enlarged heart. They ordered another echocardiogram and this one showed that not only did L have a hole in her heart (ASD), it was tucked up in a hard-to-reach spot and some of the veins from her right lung had not connected to her heart in the correct place (PAPVR). Surgery would be needed but first a CT scan needed to be done.

My little sweetie pie went with her dad for the CT scan before school on a Friday. In preparation she practiced laying very, very still. It paid off because she was perfect and no anesthesia was needed.

That next Monday the cardiologist called us. He was surprised at how large the hole was - 16mm! - and then explained that 2/3 of the oxygenated blood from her right lung was going to the wrong place in her heart. Then because of the hole's placement a good portion of the blood from both lungs that was doing what it ought was actually spilling back into her heart to be cycled through again instead of leaving for her body. The good news, though, is that because we found the problem when we did her lungs have not suffered any damage yet and all of this can be fixed by the surgery. After the surgery she will be able to live a normal life - playing all the sports and having all the babies she wants to. And Travis kept putting the relic on her heart and praying.

My understanding is that because of the size of the hole and how much of her blood was not being circulated correctly the issue went from "we can do the surgery in the next year" to "we will do the surgery before the end of the summer."

And on Sunday morning I sat in church listening to Fr. Nathan from my favorite podcast deliver his homily. He focused on the line from the Gospel, "We hoped He would be the one to redeem Israel" and he talked about how those disciples had seen Jesus do miracles, they had believed in Him, they had been invested, but here we see how their hearts are broken. They feel abandoned, scared, and let down. And I knew *exactly* how they felt.

"If this is how You treat Your friends, O Lord, no wonder You have so few!" said Teresa of Avila and echoed in my heart 500 years later.

On Wednesday of this week (yes, the same day as the IEP because God is funny) I got a phone call from the hospital offering us May 11th for the surgery. We took it and immediately began making plans for Lydia to finish her school year on the 10th, for Travis to stay with her in the hospital and miss work for at five days, and for my mom and others to help with the other kids so I can be with L as much as possible.

People ask how we are doing and we are okay. I mean, we are scared, worried, anxious, tired, overwhelmed, and Travis and I hate seeing the fear in L. She is being so brave, praying her rosary and so sincerely praying when we attend adoration and Mass but she is very scared.

People are taking care of us in incredible ways. Her school has been wonderfully supportive and caring. Our pastors care very much and will be hearing her confession and anointing her the morning of her surgery. A very good friend of ours arranged with the school and parish for adoration to happen while L is in surgery. Friends and family are signing up to support, help, and pray.

It's definitely not anything I ever thought I would have to deal with but we are grateful for what it is and the love we are being shown. And if I have seemingly blown you off or ignored you in any way recently, well, now you know why.

May 2, 2017

Sharing My Heart About IEPs, Special Ed, and My Child

I grew up in the eighties and nineties and attended really good public schools. They had similar hierarchies to what your schools probably did and there were various socio-economic backgrounds and family structures, but for the most part it was good kids from good families who all sat pretty comfortably somewhere in the middle class. (This was long enough ago that there was still a distinction between upper, middle, and lower middle class.)

I got a really good education. Without trying too hard I was able to get B's and some A's and I took some honors classes, too. I was choir president, in the plays and musicals, attended a weekly before-school Bible study all four years, and was friends with good girls who were kind and fun. Socially speaking we were also pretty middle class and pretty happy about that. It's nice to be liked enough that no one ever will pick on you but not popular enough to have deal with the pressures of being, well, popular. 

I liked school Kindergarten through 12th grade and I always had a good experience. I want that for my kids and I have hoped and prayed that they would all have similar experiences: decent grades, good friends, never bullied, never having to deal with too much pressure regarding sex or drugs or drinking, enjoying classes and teachers and learning. 

So having a kid with special needs has been hard on me. It has thrown all kinds of worries into my prayers and tossed away my hopes. I know that this is not about me, and wow I sound like an ass right back there, but I hope you understand that all of this is because I want what is best for my child and yet I am afraid that they will suffer greatly and I won't know how to help them. 

I don't know if you have a kid with special needs or if you've ever been to an IEP meeting. In case you haven't let me explain it a bit. An IEP meeting is where the principal, special ed teachers, therapists / specialists, general education classroom teacher, parents, and possibly others (nurse, school psychologist, advocates, etc) come together to look at what your child can(not) do and what the standards / goals are for their grade. Together personal goals are set and accommodations are incorporated (aids, extra time for testing, speech therapy, etc). Everyone there cares about your kid and wants to see him or her thrive and excel. But mostly what they do is tell you all the things that are wrong with your child, all the ways they are delayed, unprepared, falling behind, failing, struggling, unable, incapable, not smart enough. Because they are kind, good people they will sandwich all these negative things with positives like, "Your child is so cheerful! I love having your child in class! Your child is a hard worker and always smiling!" but it doesn't really matter how fancy and good the bread is, if you're putting it around a giant turd you've still got a shit sandwich. 

As I'm sure you can imagine or maybe know from your own experience, eating that shit sandwich is hard. It reminds me of when we were in the NICU and doctors kept telling us all the things that were going to be wrong with James. Here our little boy had come back to us and in our ignorance we hoped and believed everything would be okay. So as they told us, "He'll likely be blind." "He will probably never be able to eat." "He will probably have cerebral palsy and it will be severe - he'll be strapped in a wheelchair." "He will likely have the brain development of an infant."what they were really doing was just taking him away from us again but now one bit at a time. We had to grieve the child we thought we had and the future we assumed he would have. 

It's sort of the same at the IEP meetings, with each statement about what our kid cannot do they take away a bit of who we thought our child was and hoped for in their future. This is maybe even worse because of some kind of NICU wound, but also because back in the eighties and nineties when I was in school at my nice, good public schools filled with nice, good kids, special ed kids were Others. They weren't treated poorly necessarily but they didn't have friends. They were isolated in their own classrooms and we never really had anything to do with them. Or if they were in some regular classes they were seen as stupid and some of those kids were bullied. So yeah, they actually were treated poorly. 

I don't want that for my kid. I want my child to enjoy school, to not be bullied or pitied or ignored. I don't want them to ever feel stupid. I don't want them isolated. I don't want them to struggle. I don't want them to suffer. I don't want them to feel worthless or not-good-enough. And teachers keep telling me that it's not as bad any more and I hope it's true. We'll see what junior high and high school are like. 

This Wednesday we will have an IEP meeting for one of our kids and at it we will be modifying the education plan so there is more time in the special ed classroom and out of the gen ed class. There will be follow up conversations to previous conversations about all the things our child cannot do. I'm not happy about these things but I'm hoping that by tackling them head-on we can help our child lay the necessary foundation so later our kiddo won't struggle. I'm also grateful that understanding these things about our child has meant that we are parenting them differently and that will hopefully mean better things for this child. 

I know that in real life - and not the one in my head made up of hopes and dreams and ideal situations - my children will all suffer. Good parenting isn't protecting my kids so they never fail or hurt, it's teaching them how to thrive and find blessings despite or even in the midst of those failings and pain. I know that. And I hope you understand that this isn't about having a precious snowflake of a child. This is about passionately loving my kid, wanting to do right by my child, and feeling like a complete failure, like I've lost the game before it's even been played and there's nothing I can do about it.

So there's that. 

April 26, 2017

Appreciation of Music 101 for My Kids

I love music. I enjoy a pretty wide variety of music and there are seasons when the genres I listen to vary greatly from one to the next. Right now we listen to a mix of country, oldies, pop, and Christian music. CD's that frequently get played in the van belong to The Head and the Heart, Sarah Groves, JJ Heller, and some other contemporaries - Vance Joy, Matt Kearney, Matt Mahrer, The Lumineers, Eric Church - are much appreciated.

I have a desire to not only pass on a love of and appreciation for music to my kids but also a knowledge of music from the past and present and across genres. I want them to hear a song that samples another song and know what song is being sampled. I want them to watch a movie from that takes place in the past and be familiar with the soundtrack. I want them to be the life of the wedding reception, dancing and singing along to all kinds of music.

So far in this endevour I have introduced the kids to a few bands and singers from varying decades and genres and to mixed reviews. 

Johnny Cash 
The kids love him, except for our oldest. I have a four-disc box set (remember those?) that we listen to in the car. It helps that he sings about a lot of trains and my boys looooove trains. I love that they are experiencing American folk songs, country, gospel, and more through him.
 

The Beatles
I gave them a big talk about how The Beatles is Papa's favorite band and how much I loved them in middle and high school. I talked about how they made music for a decade and some of it was really fun, some really weird, and some really lovely. The first time they listened to One they were not impressed. The next time, they liked it a lot more. 


The Beach Boys
I played them Pet Sounds. They didn't like a single song on the album. I have no idea what's wrong with my kids and so we'll try again later. 


Weezer
The blue album is one of my favorites and it's songs instantly take me back to the halls of my high school. (Is that weird? It's true.) Jofis thinks it's too loud so I have to move all the sound to the front of the van but I think they otherwise like it. Ben especially seems to really like it. It came out in 1994 (!!!) and I realized that me playing it for my kids was like my dad playing one of his Beatles albums for me when I was a girl. I'll let that sink in and you can guess how that makes me feel.
(PS - the cd is for sale on Amazon for $4!)
(PPS - the answer is OLD. It makes me feel OLD.)


Bruce Springsteen, Queen, Michael Jackson, and the Counting Crows will also be highlighted in the future. And then there's a running mixtape of songs that I want my kids to know. I've spent way too long writing this list already but I'm sure I could add so many more songs. So. many. more. songs.

So help me fill in the gaps. Comment and tell me who I'm missing and what songs I need on my list. I feel like my country section is lacking and songs from the 90's - early 2000's definitely needs some help.


Signed, Sealed, Deliverd - Stevie Wonder
Superstition - Stevie Wonder
Brown Eyed Girl - Van Morrison
Shake Senora - Harry Belefonte
Friends in Low Places - Garth Brooks
Fast As You - Dwight Yokum
Always on My Mind - Willie Nelson
Hound Dog - Elvis
Crazy - Patsy Cline
I Fall to Pieces - Patsy Cline
R-E-S-P-E-C-T - Aretha Franklin
Unchained Melody - The Righteous Brothers
You Really Got a Hold on Me - Smokey Robinson and the Miracles
Star Man - David Bowie
Small Town - John Cougar
Jack & Diane - John Cougar
Hooked on a Feeling - Blue Suede
American Pie - Don McClean
I Wanna Dance With Somebody - Whitney Houston
Take on Me - Aha
Living on a Prayer - Bon Jovi
Stairway to Heaven (for Travis) - Led Zepplin
Bron-Yr-Aur Stomp (for me) - Led Zepplin
Ain't No Sunshine - Bill Withers
I Tell Me Ma - Van Morrison & The Chieftains
Lonesome Town - Ricky Nelson
Hello Mary Lou - Ricky Nelson
At Last - Etta James
Blue Moon - The Marcels
Mr. Sandman - The Chordettes
In the Mood - Benny Goodman
It Don't Mean a Thing - Duke Ellington
Chattanooga Choo Choo - Glenn Miller
Sing, Sing, Sing - Benny Goodman
Doo Wop - Lauren Hill
Zion - Lauren Hill
Rapper's Delight - Sugarhill Gang
Let Me Clear My Throat - DJ Kool


April 10, 2017

A New Spring Dress for Me + a $75 PinkBlush Gift Card for You

Once I became a mom the most curious thing began to happen to my shirts and dresses: one by one they all began to form small holes on my belly. I have heard several theories as to why this happens: it's where the jeans hit the counter, it's from doing dishes at the sink, it's a mystery that will only be revealed in Heaven. All I know is that eventually they all succumb to the hole and my wardrobe needs the occasional refreshing.

With Easter approaching I wanted to find something new to replace older dresses with holes. I also wanted something not black, which is generally my go-to color. My friend Jacqui mentioned a trendy online boutique called PinkBlush and because Jacqui's sense of style is on point I immediately googled that baby. 

I was totally impressed. Along with having super cute clothes that would look fabulous on 2006 Bonnie, they also have clothes to fit 2017 Bonnie and cute maternity clothes. Plus they include the measurements for the garments and the model's height, bust and hip measurements, and the size of the clothing she is wearing in the picture. I am often really hesitant to buy things I cannot try one but I had a lot of confidence because a) they had clothes in my size and b) they provided so much information that it would be hard to mess up. 

For example:

Since I'm on a bit of a budget I was happy to see that most of their prices are comparable to Target or Kohl's and I quickly went about finding a dress that would be perfect for Spring and Summer and would allow for easy nursing. #gottafeedthebaby

I ended up getting this light pink colorblock dress. It's so soft and so comfy. It's also lightweight and I know I'll be able to wear it to Mass or whenever I want to feel pretty throughout the summer and not be too hot.


Now here's the best part: PinkBlush wanted to make sure my readers got in on the goods and so they are giving away a $75 giftcard to one of my Instagram subscribers! If you've won a giveaway from them in the last six months you will not be eligible to win now but everyone else should head over to my account and to enter!

I call this "Blinded by the White" ness of my legs.