Monday, February 28, 2011

This makes perfect sense, right?

A 4-year-old boy talking on a pretend phone, with a ponytail in his hair, wearing big fluffy Mommy mittens and holding a golf ball. Of course!

Friday, February 25, 2011

4-year well visit and other

Here is a picture from a few weeks ago of Elijah making a pizza with our friend Dave. Fwee mushwooms and wots of cheese!

I brought Elijah to see Dr. Judy this morning for his 4-year well visit. I was so proud of my brave boy for the way he handled his anxiety! He started to panic a few times, but calmed down before it got out of control. He of course lost it when it was time to receive his vaccination, but thankfully that was at the very end of the visit.

All of the standard, non-heart-related medical stuff checked out great. Elijah weighed 34 lbs (36th percentile), which is super! After the nurse entered his height into the computer, she said, "You know what? Let's go measure you again, Elijah." He wasn't on the charts, so she fudged a teeny bit to get him to 37 inches, which is just barely on the charts and at the 2nd percentile. Little peanut!

He passed his hearing and vision tests, although he missed a few on the left ear but there wasn't concern. Dr. Judy did show grave concern when I mentioned Elijah's severe croup, particularly the croup he has gotten after his past few intubations. She gave me a serious look and said, "Talk to pulmonology and ENT thoroughly and GET A PLAN before surgery." We are already on it, so hopefully we will be able to indeed form a solid plan.

I heard from the scheduling gal today regarding Elijah's upcoming open heart surgery. Dr. M will be gone toward the end of May, and he's kind of an integral part of this ordeal. So, since Dan and I had the end of May or early June in mind, I think we will opt for having the surgery done sometime in early June, and preferably after Sammy's birthday on the 4th. This will allow Elijah to finish the school year and it will also get us fully past Sick Season. Unfortunately, the June schedule isn't out yet so we'll need to wait a few more weeks to get a concrete surgery date. Unless something unforeseen happens, it looks like June will be our month!

We have a chill weekend planned with not much on the agenda. Lots and lots of snuggle time. Oh! I have an update on Elijah's Shower Restaurant that I mentioned in one of my last posts. This morning I asked him what his restaurant was called and he said, "Cauliflower." I like it!

Thursday, February 24, 2011

OHS #3

When Dr. G tells me to call him on Thursday afternoon, you better believe I am going to call him on Thursday afternoon! My heart started to race as we began our phone conversation. I hoped maybe he would say that he was wrong, way wrong, and that surgery wouldn't need to happen for another five years. Ha! I can dream, right?

After reviewing Elijah's case in this morning's meeting, E's surgeon thought that OHS #3 should happen within the next 3-5 months, August being too far out. The valve replacement should be a breeze, relatively speaking, but there is a pesky little area in Elijah's right pulmonary artery that will need to be patched (the same area where a stent currently resides) and that will be the "tricky" part.

Dan's and my initial thoughts are that we want to get this done asap. Of course, we also want to put as much separation between cold/croup season and surgery as possible. The end of May or even into June would be ideal, but since we are not ultimately in charge of timing we will just wait and see how things pan out. Scheduling is due to call us in the near future so we can get a date on the calendar.

I scheduled appointments with both Elijah's ENT doctor and his pulmonologist to get their thoughts on our croup-prone child being intubated for 6 hours for open heart surgery. I sense that another bronchoscopy will be happening in the very near future as a part of all of this.

2010, I miss you!

Wednesday, February 23, 2011

Fun stuff

I'll put up a light, happy post today since I feel a heavy one brewing.

Some jokesters put this on our refrigerator a few weekends ago. :)

And look! Elijah was nice enough to sign his daycare form for me. M-O-M (a little out of order). :)

More Elijah funnies:

He likes to hunch over and walk like he's an old man with an aching back. He will let out a fake groan and say, "Wook, Mom. OHhhhhhh..Uhhghghhgggg..ooooo.." He has also started side-stepping through the house.

On his birthday, every time anyone said, "Happy birthday, Elijah!" he would say, "Hank you! Happy birthday to YOU, Mom!" :)

I learned a few mornings ago that the shower in our bathroom doubles as a restaurant. I heard Elijah in there talking to an imaginary server, saying, "Oh yes! Hank you! I'll have some more milk, pwease."

Since his cath, he has asked numerous times, "Where Doctor Gwemmels at?" "Hmmm, I suppose he's probably at the hospital!" "Go back hossa-pee-doh soon? Doctor Gwemmels fix Elijah's heart?" :(

And some Sammy facts:

He can't crawl yet, but he is ready to take off. He does NOT sit still like Elijah did for so long. When we set him on the ground, he immediately throws his body forward and tries soooo hard to get somewhere. Once he starts crawling, oh dear...

He loooooves playing peek-a-boo.

He also looooooves to scream when we are 1 minute past a feeding time. His screams most certainly pierce the ears of people living five houses down from ours.

I don't know how we got so lucky, but Sammy is a great sleeper just like his brother. Thank you, God.

Sam loves Elijah more than anyone or anything in the world. I like to position Sammy so he's RIGHT next to Elijah, almost on top of him. Sam gets so happy, patting Elijah's head and drooling all over him. If only Elijah thought it was cute, too. Instead, he says, "NO TOUCHING, SAMMY. NO SWOBBERING, SAMMY."

He makes this cute little sound of pleasure every time a bite of food enters his mouth. Ahhmmmm.....mmmm.mmmm.. The kid loves food.

His left thumb soothes him to sleep at night.

He slid out of his high chair (through the bottom) this morning and landed on his butt. He did not make one peep. He just sat on the ground and stared up at Dan.

Monday, February 21, 2011

Sunday, February 20, 2011

Happy 4th birthday to my beautiful oldest boy

Birthdays are important. We don't believe in buying huge or plentiful gifts, but we do believe in making birthdays special for our children. And we certainly made today, Elijah's 4th birthday, a special one for him.

We started the day off with a cupcake and pancake breakfast, with a side of balloons. Elijah got a few books as a present from us, which he loved. We spent the rest of the day doing whatever he wanted....movies, candy, playing..

The snow moved in quickly in the early afternoon and I started to worry, since we had invited people over for a party. I had a little talk with Elijah about his cousins possibly not being able to come over because of the snow and a forlorn look covered his face. A few seconds later, my sister texted me saying that she and her daughter, Kaleigh, would BE HERE, snow or no snow. They drove through a crazy blizzard to get to us, as did my cousin Trevor and his family, and it certainly made Elijah's day.

Dan and I agreed tonight that there is nothing better than seeing the light in this boy's eyes when we sing Happy Birthday to him.

Trevor and Auntie Lynn...THANK YOU for braving the blizzard today to get to us. It truly meant so much to our little man, who had had a rough week. THANK YOU THANK YOU THANK YOU.

We made some fun monster cupcakes from a cupcake cookbook I received for Christmas. They were a hit!

I'm so overcome with emotion on this fourth birthday of our oldest son. Elijah, we love you so much.

Cousin Kaleigh loved hanging out with our youngest love, Sammy, today. She was able to experience his serious slobber problem and give him lots of hugs. Sam is so lucky to have so many cousins who love him so much (Elijah, too!).

Elijah got his first Nerf gun today from Auntie Lynnie. FUN! We spent the entire day/evening chasing "bulls" (bullets) around the living room. I said my very first, "You're going to shoot your eye out!" My stepmom told me that reciting this very line has earned me a Mommy Medal. :)

Sammy was such a chill kid (as always) while his brother soaked in all of the attention today. At times I almost forgot he was sitting in his chair, watching all of the craziness.

Practicing Nerf Shooting with Daddy..

Happy birthday, my oldest, wonderful, beautiful, smart, funny boy. Daddy and I love you so much. I couldn't even begin to explain the depth of our love for you..

Saturday, February 19, 2011

Hospital photos and hospital-related thoughts

As I already mentioned, Elijah's visit to radiology was not a fun one. It is one that none of us will ever forget, unfortunately. After the torture was finished, Elijah was given a Curious George cd, a pet rat and five stickers, the maximum amount of loot given out at one time.

We had quite a bit of time between radiology and heart cath check-in, so we ran around the hospital, checking out all of the new construction. There were parts of the hospital that we didn't even recognize. It looks amazing!

My thoughts may or may not relate to the photos from here on.

Everyone, meet Tiptoe, the hospital rat.

Like his owner, Tiptoe has an allergy to morphine.

One of the things Elijah's anesthesiologist recommended is that we bring him back to his ENT doctor to get another bronchoscopy done. This is the same recommendation we received last year from his pulmonologist. With all of the croup he has, and with the trouble he has had breathing after being intubated the past few times, it might be worth it to see if anything serious (or fixable) is going on in his airway.

He had a bronchoscopy when he was six months old because of his squeaky breathing and the doctor found nothing, aside from a veeeeeeeery slightly narrowed airway. Since he has been intubated so much since then, it might be a good idea to see if perhaps damage has been done.

The thought of putting him through another procedure before his next open heart surgery makes me just about lose my mind. More trauma for my boy? !@#$*(! #)$*(UT sodhi!!! But, on the flip side, it certainly would be good to know what, if anything, is going on. A thought that makes me even crazier is what the state of his airway would be after being intubated for open heart surgery #3.

For this cath, the anesthesiologist used the tiniest breathing tube they had. One that they normally use for tiny babies. And it was not in his airway for very long. And he still had a VERY hard time breathing afterward. Not a good sign.

That @#%!#$@$^ airway has me more worried than open heart surgery!

Here's our boy after we got into our room in the CVCC and after we got him calmed down (i.e., after lots of hugs from Mama and after the nurses left the room). Look at that hair! By the way, there is not a single nurse or doctor that comes in the room who does not comment on Elijah's great hair.

Once we were given clearance, we ordered Elijah food and he devoured it, and then munched on some Cheerios. While I was opening the yogurt to feed to him, he said, "Mommy take a picture first!" Ha! Our first post-cath smile!

The only thing that calmed him was when Dan or I would lay on his bed with him and hold him super tight. He did not want to be in that place, and I don't blame him.

And we certainly haven't forgotten about our youngest cutie. Here is a peek at his smiley face. More of these to come!

Friday, February 18, 2011

Tired, but HOME

One of the things we have never had to deal with before now is having another child to care for while Elijah spends time in the hospital. Thankfully, Dan's wonderful parents took Sammy overnight so we both could spend time with Elijah. We got home around 10:00 last night and had kind of a restless night of sleep. I tried to put Elijah in our bed with us, but it just didn't work. After 150 kicks to the ribs, I asked Elijah if he wanted to go to his own bed. "Yes." I was in his bedroom every 30-60 minutes after that, rubbing his back because he was either yelling for me or yelling at his cough. "Go away, COUGH!"

We are all tired today. All of us except for Sam, that is. The boys just went down for a nap, so Dan and I might try to get a nap in, too.

Thanks so much for all of the supportive comments and prayers and emails. Wow! We have an amazing support system and we are so thankful for it!

Thursday, February 17, 2011


We're home. Elijah had a pretty uneventful last few hours, dozing off and on and waking up enough to eat some food. He's upstairs now with Mommy sleeping in "MommyDaddy bed."

Dr. G. stopped by one more time to check in, he'll present Elijah case next Thursday to the surgeons and other cardiologists. From their input he'll be able to give a better estimate of when the next big surgery will be.

Thanks again for the prayers.

Results and recovering

Elijah has been a very unhappy guy since he got out of the cath lab. His narrowed airway has caused some issues, as I absolutely knew it would. He came out "very croupy," so his nurse gave him an epi neb and that helped immensely. They administered some medication to help him sleep because he was so panicky. I was able to go in and see him around 4:30 and he was just waking up. He seemed very uncomfortable, kept asking to get up and refused to keep his leg straight, which he needs to do because his cath insertion site is in his groin area. Dan and I did our best to keep him calm, but he got into Panic Mode and started the croupy breathing and his sats dipped. I finally just laid down on the bed with him and wrapped my left arm around him so he couldn't see the nurses and that calmed him down a bit. One of us has to be lying on the bed with him in order for him to remain calm....which is just fine with me! Snuggle time with my boy! Dan is lying with him right now and Elijah has dozed a bit. Nurses are out of the room, so there is CALM right now. This morning was very traumatic for him...honestly, it was terrible. I don't even want to think about it. I'll store that away in the Thoughts To Avoid part of my brain.

The results from Elijah's lung scan this morning were awesome! His lungs look great, way better than Dr. G expected. Bloodflow-wise, he basically has the lungs of a healthy person. This is seriously a miracle, considering all of the crazy arteries and super unique bloodflow going on in and around his heart.

Now for cath results! Dr. G ballooned Elijah's stent that is inside his right pulmonary artery and he also ballooned a portion of his left pulmonary artery. No other work was needed. Overall, Dr. G said things were a little bit worse off than he expected. The pressures in his heart have increased quite a bit in the last 15 months, which means Open Heart Surgery #3 is on the horizon. Like, within 6 months! Ahhhhh! Neither Dan nor I were expecting this. We knew it was a possibility that it would need to happen in 2011, but we didn't imagine it would be during or before summer. Dr. G wants to talk to Dr. M (E's surgeon) before giving us a set timeline, so I'm sure we'll know specifics soon. He made it sound like he really should have the surgery any time from now until six months from now.

I have to let all of this sink in a bit. Today has been a lot. The good news is that I think we might get to go home tonight! The earliest we'd be able to leave would be 9:00. And I have a feeling another epi neb will be in store before that happens, too.

Thank you for all of the prayers today! We appreciate them more than you know!

Hard floors and stretchy balloons

After spending gazillions of dollars on hospital construction and a totally new cardiovascular unit, Dan and I wonder why they can't invest in comfortable furniture for the waiting areas. Some day, when we find a treasure chest full of gold, this will be on our list. We will purchase comfortable furniture and beds for this hospital. (I say this as Dan is curled up on the floor with my coat as his pillow and Elijah's monkey straddling his head to block out light.)

We just got a call from the cath lab and Elijah is doing great. It sounds like Dr. G is having to do some "work," for sure some ballooning but we don't know to what extent yet. They expect to be in the cath lab for about another hour, which means we'll get to see Elijah around 4:00ish if all goes well. Since he has to lie flat for 6 hours following surgery, I am planning to spend the night here with him while Dan goes home to be with Sam.

Elijah usually wakes up from his caths grumpy (understandably so), hungry (again, understandable, since he hasn't eaten since 7:00 last night) and having a hard time breathing (that darn narrowed airway of his). Please say prayers for a peaceful and uneventful wake-up for him!

Cath is underway!

I'm so sorry I haven't posted before now. We had a busy morning, getting Sammy to daycare and Elijah to the hospital for his lung scan. After FIVE attempts, an IV was started and we were ready to go. It was not a fun time watching our little boy become riddled with fear and anxiety. I hate that part. Hate it hate it hate it...

This is our first time staying in the new cardiovascular unit and it is awesome! Elijah went back to the cath lab at about 12:15 and we have not yet received our first update. At this point we have no idea how long the procedure will take. It could be done shortly or we could be waiting most of the day. We will find out soon. And most likely we will be spending the night tonight.

I'll write when I know more, I just wanted to let everyone know that we're ok!

Wednesday, February 16, 2011

A letter to my brave boy

Dear Elijah,

Tomorrow Daddy and I will bring you to the hospital so you can receive your seventh heart cath. I am sitting here, a total mess of tears, anticipating your anxiety and pain. The thought of anyone hurting you (even if it is for the purpose of helping you) or making you feel uncomfortable is one of the worst feelings in the world for me. I wish I could endure all of the physical and emotional pain for you. I would take it all, times a million, if it meant that you wouldn't have to experience any of it.

You're just a few days away from turning four years old, and that means that you have a very solid grasp of your surroundings. Because of that, this hospital stay will be a bit different than the last, back when you were still two. I worry that you won't trust me when I tell you something isn't going to hurt and I worry that this experience will give you more anxiety than you already have and I worry that you are going to be emotionally and physically uncomfortable for the majority of our hospital stay (I say "our" because I will not leave your side).

All of the worrying is really very pointless, and I know this. God has everything under control, and I know this, as well. Sometimes when I am feeling anxious like I am now, it seems impossible to turn off the worrying.

I need you to know that I will never allow anyone to cause you any sort of pain unless I know that it is helping you. That it is allowing you to stay with us on this Earth for a longer period of time. I'm so sad that the doctors and nurses have to hurt you in order to help you, Elijah. I'm so sorry for that. I wish there were another way.

This could possibly be the first hospital stay, of your many, that you will remember. In addition to any discomfort that you might store away in that smart little head of yours, I hope you also carry with you how much your daddy and I love you, support you and rally for you.

I love you, my sweet, brave boy!

Monday, February 14, 2011


We are keeping Elijah out of preschool this week and both boys out of daycare. Elijah has been hanging onto a cough and we need him to be healthy for his heart cath on Thursday. I hate to deprive him of school because he loves it so much, but we feel this is best.

I registered Elijah at Children's today for his upcoming hospital stay and the nurse asked me the standard questions: "What surgeries has Elijah had?" "How does Elijah typically handle anesthesia?" Then she asked, "Does Elijah have any implanted metal in his body?" My answer: "He has about twelve metals coils in his chest and a stent in his right pulmonary artery." She said, "Ohhh! I remember him! His caths are always so pretty! All of that metal dancing around.." Ha! Elijah and his pretty insides.

I tried talking to Elijah about his upcoming cath tonight, but he was pretty aloof. I'll try again tomorrow. I have a feeling it won't really sink in until we are there.

Dan is sick, sicker than last week. Sam is better. Elijah is on the mend. I am better. Please pray for total healing for Elijah for his cath on Thursday.

Tuesday, February 8, 2011

CHD awareness week

Did you know that it is officially Congenital Heart Disease Awareness week? In an attempt to raise awareness, a fellow heart mom has conducted interviews and is posting a heart story for each day of the week leading up to February 14th.

I didn't get through our story without crying, can you?

Stefenie, thank you so much for putting these together! What a great way to make people more aware of this disease.

Monday, February 7, 2011

Coughs, caths and cousins (and a sore leg)

Isn't this photo cute? Elijah is watching a movie with his sweet cousin, Emma..

Thank goodness croup stayed away last night while we were medicineless. I made a trip to Elijah's pulmonologist's office today over lunch and grabbed some more vials of the magic elixir. It feels very good to be stocked up.

I'll be honest, the sickness in our house is getting a little bit old. Sam is worse than ever, I got hit with another (milder) round this morning, Elijah is doing his usual post-croup coughing and now Dan is sick. Sorry for griping, I realize sickness is something every family deals with in the winter.

And onto another topic that I am having a difficult time with. Elijah's upcoming heart cath. I recently whited out the words "Elijah's heart cath" on my calendar because it was making my eyes tear up every time I would glance over and see it written there. Elijah hasn't been hospitalized in a year and three months. I have no idea what to expect regarding his anxiety. Will it be better? Worse? For me, the mother, this is one of the most difficult parts of this disease...seeing my little boy scared and confused and anxious, and anticipating all of the above.

Elijah will be getting a lung perfusion scan (a test that measures air- and blood-flow in the lungs) in the morning on February 17th. That will be followed by a heart cath performed by our very own Dr. G, and possibly Dr. B, as well, if stent work is needed. Unfortunately, there is no way to know what work will need to be done (if any) until Dr. G does the cath. After the cath, we should have a good idea about when the next open heart surgery will occur. I have a suspicion we will be spending the night in the hospital on the 17th since the cath doesn't start till sometime around 11:00 am.

A few lighter items of business so I don't sign off on a completely depressing note..

My sweet niece Emma spent a day/night with us this past weekend and we had soooo much fun with her! She was able to see with her own eyes just how much Sam can slobber. She kept saying, "Auntie Megan, there's more slobber that needs to be wiped.." :) Do you see the bib Sam is wearing in the above photo? It's sole purpose is to catch drool. He completely saturates about 3 of these per day. Sometimes we even double bib. Dan and I joke all the time about our Slobbery Sammy. Like, how we should tie a drool can under his chin so we can measure amounts at the end of each day (kind of like the rain). Or perhaps we could permanently implant one of those dental suction devices to the inside of his cheek. Ok, enough teasing. Sorry, Sam! We are just amazed!

Do you think Sam likes his food, or what? I love this picture. FEED ME, EMMA!

Sorry, I got side-tracked by drool! Back to Emma. Elijah especially enjoyed her company this past weekend. If she left the room, he would say, "EMMA?! Where Emma go?" Ever since she left yesterday, he has asked me repeatedly, "Emma come back soon, Mom?" The first thing he said when he woke up this morning was, "Emma go home? I pway wif Emma?" So, needless to say, he adores her! We all do!

While Emma was visiting we played more Wii than we normally do, so now I have a few battle wounds. When I play Wii bowling, I do a complete lunge with just my left leg. So now I feel like I went to the gym and did 50+ lunges. If you've ever done lunges, you understand my pain! Emma and Dan were able to beat me in almost everything, but I did find that my forte is in wakeboarding! Ahhhh, so much fun! Emma and I discovered a sword slicing game that was really fun, too.

That's all for now. We're hoping for a drama-free, HEALING week. Thanks for checking in!

Sunday, February 6, 2011

Croup: Season 3, Round 6

Yes, croup happened again. Thankfully again this time, Elijah showed the desire to try and remain calm and that REALLY helped. We are now out of our magic croup medicine, which makes me super nervous since it is a Sunday and we can't get more until tomorrow. Please God, protect Elijah tonight.

I am beyond exhausted, so I'm not going to write much but I'll end with this question: What does a 3-year-old who skipped his nap yesterday so he could play with his cousin AND who woke up at 4:30 a.m. with croup AND who has steroids in his system equal? CHAOS. Add a sick 8-month-old baby to that equation, and....ugh..

Friday, February 4, 2011

Can you make sense of this?

Here's a cheat sheet..

Croup: Season 3, Round 5

Despite the preventative measures we took last night, croup still presented itself. It was a fairly mild episode, perhaps because of the measures we took. For the first time ever, Elijah made an effort to stay calm. As I carried him down the stairs I said my usual, "It's ok," and he said back, "Stay calm?" He did really well. There was no fighting the neb and his level of panic was less than normal. We're making croup progress! :)

He seems perfectly fine this morning, so we are sending him to school.

Oh, and guess what?! Samson is 8 months old today!

Thursday, February 3, 2011


I am sick again and Sammy has a new sickness, as well. I hear a suspicious sound in Elijah's breathing tonight, so I did croup prevention. Ahhh, gotta love winter!

Other than that, and the incredible amounts of drool that comes out of Sammy's mouth in a given day, we don't have much to report! We have a fun weekend ahead, so we're hoping we will all heal quickly before then.

Thanks for checking in!