Wednesday, January 30, 2008

Do I really have to cut this?

I realize Elijah is not a girl, but do I really have to cut off these beautiful, curly locks?

It always gets so curly after a bath.

What is this face?? (Don't mind the dirty Daddy socks in the background. I guess it's time to buy my hubby new socks.)

Sunday, January 27, 2008

Saturday, January 26, 2008

Getting out

We just got back from our trip to the Dells. We had a great time. We didn't spend as much time in the pools/waterpark as we would have liked, but we found out that this resort wasn't exactly designed for 11-month-olds. We set Elijah in the 6-inch-deep pool, but he just shivered and looked at us like IT'S COLD IN HERE WHAT ARE YOU DOING TO ME so we took him out. Dan went down a few slides at lightning speed. His water slide rule of thumb is: shoulder blades and heels! According to this rule, those are the only things that should touch the slide, which means that he flies down them, and exits the slides at speeds faster than our eyes can process. Elijah and I had a good time trying to keep up with him. Normally I would like to participate in these types of things as well but it turns out that I would have rather just hung out with my son.

I haven't mentioned that the reason we went to the Dells in the first place is because we got a deal from BG Vacations. We got a hotel room for two nights and access to the waterpark for $59 total, which is great. BUT. We also had to attend the obligatory 90-minute presentation about buying a lifetime vacation opportunity, blah blah. We have been to these things before so we knew what to expect. When we got there, though, we were blown away by the fakeness and the cheesiness surrounding us. We did a lot of eye rolling back and forth at each other. We ended up spending much more than 90 minutes there but in the end, Dan told them, "We are totally using you for the cheap vacation. We aren't going to buy this. Sorry." It was awesome. At these things, though, they don't take no for an answer that easily. The "closer" swooped in on us and continued his quest to try to get us to spend $25,000 on the spot, when Elijah did THE MOST AWESOME THING OF ALL TIME. As we said no for the third time, and the Closer again tried to get our credit card number, Elijah looked straight at the guy, DEAD in the eye, and started yelling at him: BAHHHHH! Ah! AAAHHH! Ba! AHAHAaaahhh! HA! Ba. He never lost eye contact. Everyone around the table was stunned by his impeccable timing as they uncomfortably laughed. Dan and I knew he was telling the guy off and we looked at each other like, YES! Our son has our back! Two seconds later, we were out the door to enjoy the rest of our trip. Well done, little man.

Despite this awkward two hours, we had a really nice time together as a family. Even though it's a little extra work performing baby duties away from home, it is so refreshing to be in a different place for a few days. Elijah is a good traveler and that is a wonderful thing because we plan on showing him many places.

This is the toy car we won by spending $20 worth of tokens playing Deal or No Deal

Daddy got too tired driving home so Elijah took over for a bit

Oh yeah, we bought Elijah a new Jeep! I think he's ready. Actually, we bought this because it has wheels on the bottom. We're hoping it might encourage leg usage.

Thursday, January 24, 2008

Surgery is set

Dr. Gremmels cleared Elijah for hypospadias surgery, so the date is set for February 12th. It should be a 2 to 2.5-hour surgery and he'll need to stay in the hospital for one night. It will be good to get this out of the way. One more hurdle behind us.

We are heading out of town for a few days. We're going to the Wisconsin Dells to let Elijah splash around in the indoor pools. I will likely take plenty of pictures and share them when we get back (sorry for the lack of pictures this week, I was focusing on the Heart Walk. Please help Team Elijah, if you haven't already!).

I can't possibly write without saying something about the chubby boy, right? He has been really fun to spend time with lately. I have spent every waking, non-working minute with him because I don't want to miss any of the cuteness! It's strange, though, because I'm starting to wonder why he will accomplish a developmental goal and then he will stop doing it. It's like he wants to show us he can do something and then he gets bored with it. He was trying to clap his hands when he was four months old. He did it for a few weeks, and I haven't seen him do it ONE TIME since then. I know he can do it! He claps his blocks together all the time. He just won't do it with his hands. He was saying Mamamamamamamama over and over two months ago. He did that for a few weeks, and now he won't do it anymore. He did the motions to the Itsy Bitsy Spider over a month ago ALL BY HIMSELF and I haven't seen him do it again since. The same thing goes for physical accomplishments. We have seen him bear weight on his legs. He knows how to do it, he just won't! We know he can use his arms much more than he does. What's up with this? Stubbornness? Laziness?

Monday, January 21, 2008

Heart Walk 2008

Please help TEAM ELIJAH! (Some of you may have received this same note in an email, sorry for the duplication but we want to spread the word!)

In honor of our precious baby boy, the three of us will be walking in this year’s Twin Cities Heart Walk as the captains of TEAM ELIJAH. The Heart Walk is a great event that helps raise money for the American Heart Association, for important heart disease research and awareness. We would like to ask you to join us on our walk or make a donation, or both. The walk will take place on Harriet Island in St. Paul at 10am on 4/26/08. For more information about it, click here or keep an eye on Eli's blog as the date gets closer.

We are looking for a handful of our family and friends to become team leaders along with us, to help us raise money for this organization. If you go to Elijah's Donation Page, you can click on My Team Page, then Join Our Team and then you can register online. Being a team leader just means that you will recruit walkers/donators from your own network of friends and family.

If you're not interested in being a team leader, but would like to contribute funds, you can easily do that as well. Go to Elijah's Donation Page and you can make a secure online credit card donation. The American Heart Association's online fundraising website has a minimum donation amount of $25. If you prefer to donate less, you can do so by sending a check directly to us, made out to the American Heart Association.

If you're not interested in being a team leader OR donating, you can just come walk with us! You can do all three things, just one or none at all (we promise we won't take it personally).

Your donation, participation and/or support is very valued. We sincerely appreciate ANY amount of support we can get, even if it's just an email saying, "GO TEAM ELIJAH!" Thank you, our dear friends and family, we hope to see you on April 26th.

Megan, Dan & Elijah

p.s. If you walk with us on the 26th, you'll get a TEAM ELIJAH t-shirt to keep!

p.p.s. Some of you recently and kindly donated to another organization, The Children's Heart Foundation, in honor of Elijah. We apologize for making donation requests so close together and will absolutely NOT be offended if you choose not to donate again. This event is just really important and we're very excited about it and want to do what we can to help out.

Thursday, January 17, 2008


It's hilarious that Elijah's urologist's first name is Yuri. Back in college, you know his fellow frat boys were yelling, "The YURINATOR!! WWOOoooooooHHOOo!" Actually, maybe not, because based on the way he treats us, one might think he didn't have many friends. We realized today how lucky we are that all of Elijah's other doctors have COMPASSION and BEDSIDE MANNER. It is obvious that this guy is very good at what he does. He does not falter in his knowledge at all and is obviously a confident, skilled doctor and surgeon. This is the only reason we will tolerate waiting for an hour in his waiting room only to spend 90 seconds talking to him, at which point he says to me in a very degrading manner, "We want what's BEST for your child," as if I don't want what is best for my child!

He had told us after Elijah was born to come back when he was 11 months old so that we could do his hypospadias surgery when he was 12 months old. So here we are, in his office when Eli is 11 months old, just like he asked. He asked about Elijah's upcoming heart surgery and we said we don't have a definite timeline but that we're guessing it will take place June-ish. He said, in a very you-should-have-known-this tone that in order to get his hypospadias repaired, we first had to get clearance from cardiology. Uh, ok...sure, we can do that, but why did we drive all the way to downtown Minneapolis just to hear that? This is when he said, "We want what is BEST for your child. Why would we do surgery now if cardiology doesn't clear him for it?" Angry Mommy responds with, "That's why we're here! We do want what's best for him. We're here because you told us to come back at this time." And he exited the room like a lightning bolt.

So now we'll call cardiology and figure out whether his hypospadias can be fixed now or if it will have to wait until next fall.

If only ALL DOCTORS treated their patients like our dear Dr. Gremmels does. We love Dr. Gremmels! And Dr. Snook! And Dr. Moga!

I have to share one funny thing from our appointment today. As we sat for ONE WHOLE HOUR in the cramped waiting room, we were able to entertain the other people sharing the waiting room with us. Elijah was soooo loud, jabbering and grunting non-stop. There were a few other babies just staring at him like, WHY ARE YOU TALKING SO MUCH, YOU CHUBBY, CURLY-HAIRED BABY? It was really funny. Other parents kept chuckling and saying to us, "He likes to talk!" It seemed like he really enjoyed having an audience. If someone got up to leave the room, he would look at them as if to say, WHERE ARE YOU GOING?!? I'M ALMOST TO THE FUNNY PART!

I know I've probably worn out my welcome for prayer requests, but we need more prayers for Baby Isaac, who is having an unexpected heart surgery tomorrow. Poor little guy, he and his family have been through so much. There has been so much going on this week with my heart babies! :( It has been a really sad week. Thanks for praying for and following the angels Madeline and Kate. They are in Heaven now and watching over all of us!

Tuesday, January 15, 2008

My heart is broken

I know I asked you all for prayers for Kate and Madeline the other day but I am asking again. I am crying as I write this. I cannot imagine what their parents must be going through. If you're comfortable, leave them notes of support. I know how much this means to us when we're in the middle of a crisis (not that we've ever been near this level of crisis).

Update: Little Kate passed away this morning in her mama's arms. :( I am so very sad for her parents. My heart won't stop aching. Please keep them in your prayers.

Another update: Madeline passed away yesterday (Wednesday) as well. What a sad week. Please pray for peace for her parents. Thank you.

Monday, January 14, 2008

Elijah + avocados

Messy cottage cheese-avocado feast with absent left sock

We think Elijah might be involved in a gang called the Left Foot Mafia. Every time we put socks on him (which is often here in FRIGID Minnesota) he removes only the left one and then continues about his play. Perhaps his left foot is always a bit too warm? I don't know, but it's pretty funny. The right sock always stays on.

Eli has a urology appointment this Thursday. We've had such a nice reprieve from doctor's visits, so it makes me sad that we're headed back into doctor and hospital territory. Next month hypospadias surgery will happen (see Elijah's Story tab if you want more info about this) and also a cardiology check and a 12-month well visit. Last week I was positive that his lips looked more blue so Dan brought him in to get his oxygen sats checked. Amazingly, they were exactly what they were a few months ago (80-84%) so we were very happy to hear this.

Our chubby boy is getting so smart! You can just see that he understands a whole lot more than ever. He now knows how to knock over his tower of blocks when I ask him to and when I get to that part in the Itsy Bitsy Spider when I tickle his neck, he anticipates it with giggling winces. I can't spend enough time with this person. I can't get enough! I wish I could just put him in my pocket and take him everywhere with me.

I'll try to post a lot of fun, cute, positive things before we are headed back into the land of doctors. Here are some fun pics to start off....

Cottage cheese face

THIS is a fat knee

Do you think Daddy dressed Elijah (this tummy moment is very rare, by the way)??

Splashy bath man. WOW does he like to splash.

Saturday, January 12, 2008

Calendar and a collection of events and information


- Tetralogy of Fallot, Pulmonary Atresia, MAPCAs (repaired Apr 15, 2008; expect valve replacement in early 2011?)

- Solitary left kidney (no reflux)

- Hypospadias (repaired Aug 20, 2008)

- Tethered spinal cord (diagnosed May 11, 2009/repaired June 18, 2009)


Feb 20, 2007 – Hospitalized following birth due to feeding issues and heart monitoring (ventilated for 3 days/hospitalized for 2.5 weeks)

Feb 20, 2007 – Heart catheterization (already ventilated due to birth complications)

May 2, 2007 – Heart catheterization (not ventilated/no overnight stay)

May 25, 2007 – Open heart surgery to place shunt and repair collaterals (ventilated for 6 days/hospitalized for 10 days)

Jul 27, 2007 – Bronchoscopy (ventilated for less than 1 hour/no overnight stay)

Oct 29, 2007 – Heart catheterization (ventilated for 5 hours/no overnight stay)

Mar 19, 2008 – Heart catheterization (ventilated for 3 hours/no overnight stay)

Apr 15, 2008 – Open heart surgery to replace shunt with bovine valve, repair collaterals and place stent in pulmonary artery (ventilated for 3 days/hospitalized for 8 days)

Aug 20, 2008 – Hypospadias repair (ventilated for 3 hours/no overnight stay)

Nov 26, 2008 – Heart catheterization (ventilated for 5 hours/hospitalized for 1 day)

May 11, 2009 – MRI scan of brain/spine (ventilated for 2 hours/no overnight stay)

June 18, 2009 - Neurosurgery to release tethered spinal cord (ventilated for 2 hours/hospitalized for 5 days)

Nov 9, 2009 – Heart catheterization (ventilated for 3 hours/no overnight stay)

Feb 17, 2011 – Heart catheterization (ventilated for 4 hours/no overnight stay)

May 2, 2011 – Bronchoscopy/laryngoscopy (ventilated for 1 hour/no overnight stay)

Jun 10, 2011 – Open heart surgery to replace bovine valve with larger human valve and patch right pulmonary artery (ventilated for 10 hours/ hospitalized for 5 days)

* Also has had a handful of hospitalizations related to croup (no ventilation) and heart failure (no ventilation).

Friday, January 11, 2008

My chunky boy

Dan went up north with some friends this weekend, so Elijah and I get to bond here at home. It's so much fun for me to spend quality time with him. During the week when I'm working from 7-4 and only get to see the chunky monkey for two hours every night, I do get a little upset. I often find myself thinking, WHY?!? Why is it fair that I only get two hours a night with my baby? But then I remind myself that I have AMAZING insurance and AMAZING benefits and, for Elijah's sake, it could not be any other way. Dan stays home with Eli two days every week and that is perfect for our situation. It couldn't be more ideal, actually. I really have nothing to complain about.

Our chubby little man has gotten SO MUCH CHUBBIER in the past couple weeks. This week he weighed in at 21.5 lbs. He has crossed over the line between being tolerably chubby and being difficult-to-handle chubby. I'm having a very hard time maneuvering and lugging this big boy around. My back hurts a lot of the time and I'm unable to cart him around the house the way I did a month ago. It's good that he's gaining weight. It's very good! But it's taking a toll on me (that's not a complaint, his weight gain is nothing but a blessing. I'll take the brunt any day.).

Lately Elijah has been letting out really deep growls. It is so funny. He has always been a growler, but now it's a few octaves lower, like he has become a bass growler instead of a tenor growler. Hopefully we can get it on video in the next couple days to share with you.

He has also been very clingy lately. We are working on the stranger anxiety issue and on getting him to be comfortable around other people. He loves Daddy more than anything, second place is Mommy, and everyone else is chopped liver. We're trying really hard not to "rescue" him when he's in an uncomfortable situation because we want him to get accustomed to being around others. This is our current "project," next to the tummy time that we're always trying to get him used to. I can't believe that at almost eleven months old, he STILL won't tolerate tummy time.

He has been eating SO WELL lately. Not that he has ever not eaten well, but he is eating extra good these days. I guess that explains my sore arms and shoulders, huh? We've recently introduced him to some new, chunkier foods, which he's really taken to. He now loves cottage cheese and avocados and bananas and cookies and crackers. Just a few weeks ago he was gagging uncontrollably on all of those things so it's good to see progress in the food swallowing.

I could go on and on about the cuteness that surrounds this special little person, but I'll save some for next time. I'll take some good pictures this weekend and share them. Thanks, as always, for checking in on us. It really means so much. Please don't forget to pray for the babies I mentioned in my last post. They REALLY NEED PRAYERS. Thank you, it means a lot.


I know for a fact that the reason Elijah has done so well through all of his medical junk and his surgeries is because he has had about a thousand people praying for him. He received huge amounts of prayer even when he was the size of a peanut in my belly. One of the things I have learned so far in this journey is that PRAYER WORKS. Sooo....

We seem to know a lot of people right now who are in serious need of serious prayer. I'd like to ask all of you to help out by sending up a few prayers for Madeline, who has been through more than everyone in the states of Minnesota, Iowa and Wisconsin combined. She needs a new heart, but just recently got bumped off the transplant list because the rest of her problems are becoming quite serious. She's in a critical state right now. She's back on the evil ECMO machine for the third time in five months. Her dad wrote on her website this morning, "Few expected Madeline to make it through the night, but she did."

Another cute baby who I check in on regularly, Baby Isaac, has to go in for an unexpected open heart surgery next week. I cannot imagine having a week to emotionally prepare for an OHS, so please say some prayers for Isaac AND his sweet family.

And then there's Baby Kate, who has spent 120 out of the last 168 days in the hospital. The doctors don't know exactly what to think because her health has been like a rollercoaster since her last OHS.

All of these babies have parents who are AMAZING and who have gone through A WHOLE LOT, like, more than I can ever fathom. Please pray for them and tell your friends to pray for them, too. THANK YOU.

Tuesday, January 8, 2008

My moment

Do you ever have those moments when the world stops around you and everything seems perfectly aligned and peaceful? Then you try to store everything you are smelling, feeling, seeing and touching away in your mind so that you can come back to that moment later? I've had a few of them in my life, and I often take myself back to those moments for peace when I need it. They are pretty rare (at least for me) and I think that's what makes them so special and memorable. I experienced one of these rare moments this week during our flight back to Minneapolis.
We were in the airplane, the plane was dark and quiet, Dan had his eyes closed in the seat next to me and Elijah was sprawled out in my lap, contentedly playing with a plastic cup, turning it over and over in his hands, examining it from every angle and chewing on it with his new teeth. I reached down and ran the backs of my fingers along his velvety soft, chubby neck, as I often do, and then I leaned over and kissed him in the same spot and smelled his perfect, sweet baby scent. I ran my fingers through his curls and hugged him tightly in my arms as he babbled to the plastic cup.
It was the perfect moment. With my husband resting in the seat next to me, my baby, this sweet and amazing little person, was sitting in my lap, content and relaxed, allowing me to touch and smell and snuggle him as much as I wanted. For as long as I live, I will know the smell and softness of his skin and the sweet sound of his voice and the peaceful feeling I had inside of me as if it were that exact moment. It will stay with me forever.
Too often I find myself getting caught up in wanting the next stage to get here. I am constantly wishing for Elijah to be able to crawl, walk and talk. By doing that, I'm wishing away this precious stage he is in right now. During my moment on the plane, I genuinely appreciated Elijah for who he was at that exact second in time. I think it's somewhat natural to look forward to the next step and to be curious about what is to come, but it felt so nice to truly live in the moment and to be sincerely enjoying exactly what that moment was worth.
Elijah, if you read this some day, I hope you are still letting me snuggle and hug you. If not, please know how much it means that I will at least always have the memory of it. I love you!

Friday, January 4, 2008

He might look a bit like me after all??

My dad, stepmom and brother put these photos into a picture frame for me for Christmas...

p.s. I've been meaning to say THANK YOU to all of you who donated money to the Children's Heart Foundation. Thank you thank you thank you. This means so much to us. More than $600 was raised in honor of Elijah!

Thursday, January 3, 2008

Wednesday, January 2, 2008

To: Grandma, Grandpa, Uncle Joel and Puppy Juan From: Elijah

Dear Grandma, Grandpa, Uncle Joel and Juan,

After a very long day in airports and on airplanes yesterday, WE MADE IT HOME! Not to brag or anything, but I was a very good boy despite the off-the-charts level of tiredness I had reached. I hardly cried at all. The First Officer didn't show up for our first flight (too much New Years partying, I guess) and our second flight was delayed due to bad weather. We were all zombies by the time we got home last night.

Now to the important stuff.

Grandpa: I enjoyed making funny faces and smiling at you and having you read books and watch Baby Signing Times with me. Thank you for carrying my chunky body around the house when I was fussy. Sorry if I hurt your back. I'm very lucky to have you as a grandpa and I can't wait to get hugs, kisses and snuggles from you again.

Grandma: Thank you for washing my clothes and blankets when I pooped and peed through them multiple times and for the many yummy meals that made Mommy gain seven pounds. I didn't necessarily enjoy the tummy time you helped me with, but Mommy says she is thankful for that. I loved it when you blew air into my chubby neck and made me giggle. That tickles!

Grandma AND Grandpa: Thank you for enduring the sofa bed so that we could take over your dark, quiet, comfy bedroom and thanks for the wonderful Christmas gifts.

Juan: I know you were a little jealous of the attention everyone was giving me, so thank you for allowing me to be the focus of the house for a few days and for tolerating my crying and constant babbling and grunting. I understand that you went on fewer walks and didn't get pet as much because of me, so that is why I didn't get upset when you decided that my squeaky ducky toy was indeed yours. I hope you enjoyed all the Cheerios I threw onto the floor just for you.

Joel: Thank you for reading to me and giving me hugs and for keeping my daddy entertained with your Xbox 360. Thanks for giving up precious football-watching time so I could watch my beloved Veggie Tales. Mommy says she is so happy to have you as a brother and I think you're a great uncle.

Next time we come visit, Mommy wants to see the Biltmore Mansion and maybe even get up into the mountains to ski. Next time we'll stay longer because the four days we just spent with you wasn't nearly long enough. Now we're back into the routine of work, daycare and co-o-o-old weather. We miss and love you all very much!

I'm tired, I better go take a nap.


p.s. Mom will post pictures later. She took a lot.

p.p.s. On New Years Eve, I heard you guys laughing all night long while I was in bed. It sounded like you were having a good time. What were you doing? I think I heard something about Sasquatch, baby seals and a train pipe?