Our little “Meg-Peg” turned one last week. For those of you who know Madeline, you know what a big deal that is. I will eventually get to my experiment, which was using one of our favorite pictures of 7-month-old Madeline to remedy the fact that we have not put up one single picture of Madeline all year. But first, I felt it was odd that it took a whole year to hang a picture of Madeline and I wanted to examine why.
Before I start, I will apologize for the lengthy discourse that follows. It was time to process all the stuff that happened this year and, lucky you, this blog is my medium for downloading. It gets a little philosophical, a little theological and, if I’m honest, a little sappy. Writing this was extremely cathartic, so just consider yourself forewarned.
One Year Ago...
Madeline was born a healthy little girl. Her first night out of the womb, she slept 8 hours straight and could not be awoken to eat. We were a little freaked, but everyone said she was just recovering from the “trauma” of being born. Her amazing sleep abilities continued when we got home. She slept ALL the time and for LONG periods of time. Before she was a month, she was sleeping through the night. After Nora, our extremely high maintenance sleeper (who only just started sleeping through the night a month ago after starting asthma treatments), we thought we had created a super baby (well, she is pretty super).
|A week before her CHD was discovered|
It’s funny now looking back at all the little clues that something was wrong. It seems ridiculous that we didn’t pick anything up earlier. To his credit, Nick was really worried about how much she was sleeping. “It just can’t be this easy,” he kept saying. The doctors told us to enjoy the extra sleep. We joked about her having a blue skin tone. Over the next 6 weeks, her eating times got shorter and her sleeping times got longer. She was always cold and needed to be wrapped up in several blankets. She’d sweat when she’d eat. I compulsively felt her fontanel, convinced that it was constantly a little sunken.
It’s also humbling when I look back and see God’s hand in the process to healing and the sheer number of people who had to be at the top of their game and responsive to that little nagging feeling that something was just not right.
I know most of you know the story, but when Madeline was just over 6 weeks old, she developed a nasty, goopy eye one day. Nora had very oddly not napped that day, so on a whim, I invited our neighbor, Anna, and her two kiddos over to play. Anna took one look at Madeline’s eye and suggested I call the doctor right away. I said that it looked like it was clearing up. She thought I should still call because her baby had the same thing a week prior and they had to bring her into the ER. So I called. Madeline was a little older, so there was no urgency. I made an appointment for 9am the following day. Anna offered to watch Nora for what was supposed to be a super quick visit.
By that evening, the goop had stopped oozing. By the next morning, her eye was totally clear. I considered canceling the appointment because I really hate going in for an appointment only to be looked at with that “awww…it’s a new uber-paranoid parent” look and told that nothing is wrong. But I couldn’t shake this nagging feeling that I should take her in anyway. Her eating wasn’t the greatest, so if nothing else, they could check her weight and put my mind at ease.
I knew immediately that Dr. Kirmani was a first year resident. She took copious notes and asked lots and lots of questions (the note taking is a dead giveaway). After a very thorough physical exam, she noted right away that her eyes looked great, and then dropped a bomb. Her weight gain had slowed down to almost nothing, her heart and breathing rates were off the charts. She thought there may be something wrong with Madeline’s heart.
Six hours and an EKG, a chest xray and an ECHO later, Madeline was admitted to the hospital, put on several heart medications and scheduled for open-heart surgery the following week. Madeline was born with a very rare congenital heart defect (CHD) called Total Anomalous Pulmonary Venous Return (TAPVR). All of her pulmonary veins were attached to the wrong side of her heart so all her blood was going through one side. There was a tiny hole where the mixed blood left her heart to go to the rest of the body, so she never got quite enough oxygen. Her particular form of TAPVR occurs in only 1 out of every 750,000 live births.
|First time holding her after surgery!|
The timing of all this was impeccable. By the very next morning, Madeline was unable to nurse for more than 60 seconds at a time and they had to put in an NG tube so she could eat. I shudder to think what would have happened had it gone untreated for any longer. We found out that week that we really were “lucky” – she had what her surgeon called “the appendectomy of open heart surgery.” It was a simple procedure, as far as heart surgery goes, and one surgery is usually all that is ever needed (many CHDs require at least 3). Everything went amazingly well. A few days later, she was off morphine. Less than a week later, she was discharged.
Madeline is “fixed” now, but that doesn’t change the fact that she has a heart defect. She’s still at a higher risk even if she gets a simple infection. She will probably have (minor) cognitive impacts from being on bypass. Her heart is only now getting back to “normal” size.
Over the course of the year, Madeline has completely changed our perspective on parenting. To border on the morbid, giving your child to a stranger, not knowing if you will see her alive again makes some things seem really unimportant. Like how much money we have (which is a really good thing in our case!). How many people read my blog. How good my resume looks. Or how early Madeline rolls over, crawls, walks, talks, runs. Or how soon she sleeps through the night. Madeline is actually still a champion sleeper, but to be completely honest, her super sleeping skills still make me nervous. I have cherished those random weeks during the year while she was teething or a little sick or just needy for whatever reason and needed to be rocked to sleep. She makes us experience each day in the reality of the unknown. We strive to live with no regrets. Through this experience, I have met an amazing family who lost their precious baby to a CHD; I am acutely aware of the value of each second with those I love. Thank you, Jill and Landon, for sharing your beautiful Britynn with us.
So all this rambling and still I haven’t noted why there were no pictures of Madeline up in our house. I don’t know for sure, but I have a few thoughts. Most obviously, it was an insanely stressful, busy and chaotic year. We moved to a new town, bought our first house, Nick started his first year of graduate school, we had our second child, who then had open heart surgery. Printing pictures was just not a huge priority. But now thinking back, I wonder how much that ever-present sense of the “unknown” played a role. Like being a little worried that putting up a picture in honor of Madeline would soon become a memorial to her.
But then the year turned over, and something clicked in me, too. My goofy, stubborn and intensely happy little girl is alive and healthy today. I get each beautiful day to watch her and her sister snuggle, laugh, scream and fight. That’s all I get. One day at a time. I should celebrate it.
So I present this post in honor of my beautiful little Meg-Peg poo.
Time to completion: 20 – 30 minutes (active), overnight to dry.
This is probably a kid-friendly project, but I didn’t test it out. Plus, beware that the fumes from the ModPodge are rather strong, so I’m not sure I’d like Nora to use it. Make sure to do the project in a well-ventilated area.
- One homemade faux canvas print (approx 8x10): $3.90 ($0.15 for portion of ModPodge; $0.20 for paint; $0.50 for paint brush; $0.05 for glue; $3.00 for print)
- One 8x10 canvas print: $40 - $75 depending on where you get it done.
$11.06 for the 16 oz jar of Mod Podge (which would make at least 100 of these projects)
Grape Nuts box ($4.00 for the cereal, but I count it as free since we buy it anyway)
$3.00 for a tube of black (or whatever color) acrylic paint (which would make lots of these projects as well). Acrylic is water-based, extremely safe (it’s what they recommend pregnant artists use) and pretty cheap.
$0.50 for foam paint brush
About 4 feet of duct tape (I think its about $4.00 for a large roll)
$1.00 for school glue (or any kind of glue you have around – you don’t need much)
$3.00 for an 8x10 print at Walgreens
Scissors (free – doesn’t everyone have some at home??) or, if you have it, a photo trimmer.
Making a faux canvas has been on my list for quite a while, but I couldn’t figure out how to do it. Then, one day on Pinterest, I stumbled on this post. I used her Mod Podge idea, but modified it a bit. I don’t have 1x1 scrap wood lying around, but we do go through a ridiculous amount of cereal. Couldn’t I use a cereal box? For my first attempt, I used a Grape Nuts box because it was closest to an 8x10 and wouldn’t leave space around the edges. Eventually, I’d like to try getting a color (or B&W) paper copy made at a copy store so I could customize the size and actually wrap the picture around the box, but for now, this works pretty well.
2. Measure the picture and mark where you need to cut it so it will just fit on the box with very little (or no) overhang.
3. Paint the edges of the cereal box. I used black, but you could use whatever colors worked with your picture. Acrylic dries really fast.
5. Once the paint is dry (usually about 10 minutes), glue the picture to the box.
6. Get out the Mod Podge and your paintbrush. Brush a nice medium layer of the stuff over the entire picture. You should be able to see it – it looks like glue.
8. Once it looks even, let it dry overnight.
9. Hang on the wall!
Is this perfect? No. It would probably look even better as black and white. But it looks pretty darn good and it was fun.
|Pretty cool, eh? No photoshopping done.|
As a postscript, I just want to mention that I am forever indebted to so many people during such a horrendous time. Anna, my dear friend and neighbor, who had the justified paranoia to insist I call the doctor for Madeline’s goopy eye and who watched Nora all day long (and so many days since). Drs. Kirmani and Sullivan for their keen eyes and persistence. The cardiology team, especially, Drs. Ng, Morriss and Trudy for their amazing attention to detail, kindness, compassion and validation of everything I felt and observed. Dr. Davis for his magic hands. Tina for her openness and caring. The incredible, incredible, incredible nurses in the PICU and 2JCP, including Heather, Emily, Mike, Hailey, and so many others whose names I have so rudely forgotten. Madeline’s heart buddy, Olivia, and her awesome mama Jess, for late night supportive phase 10 and blab sessions. And of course, our families and friends, many of whom we had just met, who were so supportive and giving of time, energy and resources. And thank you, Jesus, for all these amazing people.