Happy SIXTH Birthday, Sammy!

Happy HAPPY 6th birthday to our sweet, sensitive, kind, thoughtful, organized, creative, deep-voiced, smart, FUNNY little Sammy. I cannot imagine our family without you. You are one LOVED little boy and it's hard to believe that six years have passed since that first time we heard you cry-growl. I love you so much, my Sammy Jammy!

I think it's safe to say that Sammy had a great birthday yesterday. We spoiled him rotten. He requested a strawberry cake with strawberry frosting and fresh strawberries on top. So guess what he got! The birthday boy gets what the birthday boy requests. :)

Almost every boy in Sammy's kindergarten class was able to attend the party. The gift opening was particularly interesting (MADNESS!). It made my mama heart happy to see him running around and happily playing with his classmates. They are such a close bunch. Their teacher loves Sammy so much that she even made an appearance!

Here's the kindergarten boy crew! Plus a few cousins and Elijah's bff. :) LOVE THIS PIC!

Sammy my Jammy. I ADORE you. I love when you request mama snuggles. I love that you intensely love your family and that you request "MMMMmmmm!!!!!! SNUGGLES!!!!!!!" often.

My four boys and I are in the midst of crazed packing, purging and planning. We will have some big news coming up in the next week or so.

Thank you so much for checking in! If it is on your heart, please pray for Elijah as he will be having surgery tomorrow morning. Pray for: no anxiety in the OR, a successful surgery (the first two have been Unsuccessful), minimal effects from anesthesia and a quick trip back home. Thank you!!!

The apple fortress and a prayer request

This weekend I am thankful for lousy weather. This has been our first FULL weekend all together as a family at home in months. It has been wonderful!

On Friday we went to a new apple orchard, or "apple fortress," as Sammy called it. :)

We had a great time picking apples and enjoying the gorgeous scenery and spilling our apple cider and having to purchase a new cup as it dripped down my back and all over the barn floor. 

On Saturday the boys earned a trip to the movie theater, so we watched Cloudy with a Chance of Meatballs 2, or "Channy and the Meatballs 2," as Sammy called it. Elijah was sure to correct him, so he has it right now. :)

And today brought another fun adventure, which I will save for later in the week. For now, a prayer request..

Elijah will be having surgery on his left ear on Tuesday at noon. The surgeon will go in through the skull bone behind his ear. He will look for regrowth of the mass that was removed in April. If there is regrowth, he'll remove it and we'll come back in 6ish months. If there is no evidence of regrowth, he will place a prosthetic device that will hopefully restore hearing in that ear. If he is able to place a prosthesis, life will be very gentle for a few weeks. The surgeon explained that even a big sneeze could dislodge the device and require additional surgery.

Please pray for our oldest boy on Tuesday! Pray for a successful surgery and for great news and as uneventful of a day as possible. Also pray for peace for all of us! Sammy included, as he will spend the day away from his family.

Later in the week I will share photos from today's fun adventure! Thank you so much for checking in and for PRAYING!

The Mask, and...is spring finally here?!

I had lunch with my sweet friend Sue today and she made me remember that I hadn't written an update about THE MASK and how Elijah dealt with that during his surgery. I've been so caught up with the details that I haven't thought to write an update about that. After all of your prayers, letters, emails and cards, I have to tell you that YOUR PRAYERS HELPED!

(Here's E from tonight, dressed as a dragon and wandering around outside. We had some sidewalk gawkers. :)

We were sure to get E a good heaping dose of Versed before his surgery. He became totally relaxed and loopy, which was a good thing. Dan took him back to the OR, as he usually does (I still can't stomach it after the one time I went) and he said that in standard Elijah fashion he attempted to distract everyone when the mask came out. "Hey guys! I....I have a qu-question!" "Oh, what's your question, Elijah?" "Uhh, ummmm, uhhhh..." After three rounds of this, they finally put the mask on his face and put him to sleep. Dan said he put up a tiny fight, but NOTHING compared to usual. From now on, we will go the Versed route. Thank you all for your prayers about this and your comforting encouraging letters! Elijah and Sammy have adored them and we are grateful beyond words.

We are enjoying the beautiful weather! We're hoping it sticks around this time. It is May, right?!

I tried taking photos of Sammy tonight, and he put up such a fuss which is further proof that he and his brother are such opposites. "NO, MOMMY! NOOOOOO PICTURES!"

Sammy is still sooo independent. He certainly needs control of MOST things in his little life. He is such a funny kid. We love him to pieces!

Dan is back at work at the dropzone now Wed-Sun, so we are beginning to adjust to that. It is a new season!

I will end with a few funnies from the boys. If you're on Facebook, these will be repeats.

Sammy: [fake cough....faker cough....way faker cough..] MOMMY! I have a cough!
Me: I hear that! Are you okay?
Sammy: NOOOooo! I fink I'm DYING!

While waiting for the bus with Elijah one morning last week (in the snowy coldness) Elijah said, "The grass just growled at me, Mr. Slushy!" Not sure what that meant, but it made me laugh!

And here is Elijah, saying, "Mommy! Take a picture of ME!"

Elijah has been using the word "confused" in place of the word "disappointed," which I find to be super cute. He will say, "Mom! You aren't coming to the club with us today? I am very confused about that! I will miss you!" :) I refuse to correct him.

And last but not least, a few Elijah-isms to wrap up:
"Mom, you are the chocolate chips in my cookie."
"You are the elbow on my arm."
"You are the peaches in my oatmeal."
"You are the lobe on my ear."
"You are the woodpecker sitting on my long nose."

Have a good week! Thanks for checking in! xo

Ear surgery

I will tell you the good news up front to keep you from wondering! We are HOME (all except Sammy, who is at Grandma's house tonight--thank you, Grandma, for taking such good care of our boy tonight)! Elijah is soundly sleeping in our bed after a long day at the hospital. He was given lots o' drugs today, which makes for a sleepy boy. He has to wear a headband (that you will see in the below photos) for 24 hours to hold the gauze in place. The gauze is fairly bloody, but we are hoping for no fresh blood hereafter. Elijah is not in any pain, but we are staying on top of the pain meds just to be safe. He came out of surgery groggy but doing really well. NO CROUP, praise God! NO VOMITING, praise God! A little crabbiness, which is totally understandable! But feeling good, considering everything. One of the very thoughtful things he has received in the past few days was a Target gift card from my cousin Trevor (that I had placed safely into his little red wallet). The first coherent thing he said to me after surgery was, "Where is my wallet, MOM?!" "Uhh, it's safe at home!" "Well when can I go to Target!!" :)

The surgery took about 4.5 hours. When the surgeon came in to speak to us, the first thing he said was, "It was a sad day for Elijah's ear." :( The cholesteatoma (mass) that he removed had been growing in there for a while. He confirmed that this WAS the congenital variety as opposed to the acquired variety, so who knows how long it has been so big. And it was big! He called it "extensive" a few different times. It was so extensive that, get this, it actually DISSOLVED almost all of the bones inside his ear. I found that to be crazy! So the doctor removed the mass, the tissue that had grown into the mastoid and any bone remnants that were still floating around. Sadly, now Elijah is minus any ear bones in his left ear. The good news is that his footplate was totally intact, which means that hearing is possible! We will bring him back in for a prosthesis placement surgery in about six months, and after that there is a very good chance that most of his hearing will be restored. This is GREAT news, and it almost took away the sting from the rest of the news we received today.

We had to fight against feelings of anger today. Another major thing? Really?! What has he done to deserve all of this? But, we have to keep it in perspective. It could be so much worse, and we totally understand this. We never want him to have to endure MORE, but I have to believe there is a reason for all of this. He is one strong and STEADFAST boy. We will love and support him forever in every way that we can.

SAMMY! We love you so much, too! We will love and support you, as well, our very precious boy! You are an amazing little person and I cannot wait to squeeze you tomorrow morning!

Warmth, snow, letters and stones

We are back in the frigid cold state of Minnesota. It is freezing outside! This is ridiculous! Needless to say, we enjoyed our vacation thoroughly. It was WARM and wonderful and tons of fun. Dan and I were able to sneak away to South Carolina by ourselves for two days. As always, the time passed too quickly. We are very thankful for my dad and stepmom's generosity, hospitality and help with our boys.

Fort Sumter!

The boys had a blast with Grammie and Gramps. They were able to do some pretty fun things while they were there, like go to an animal ranch where they fed animals from inside the car. The llamas tried to steal Gramps' bucket and Sammy's favorite animal was the cow.

Gramps' freezer is NEVER short on ice cream. :)

And every morning the boys helped Grammie feed the birds.

I spent my entire childhood getting onto airplanes in order to fly away from my dad. I'm still doing it, and I still hate it. I love my dad and stepmom so much! We all do. We have sad hearts today. We miss them.

My dad is having a small surgery next week sometime, so could I ask for your prayers for him? He is going to do AWESOME. Pray for a calm spirit for him, and of course for total success, as well.

We are gearing up for Elijah's ear surgery on Tuesday. I've been doing a good job of keeping it out of my head. I'll worry about that tomorrow. Isn't that a line from Gone With the Wind? :)

THANK YOU to all of you who have sent cards and letters and other fun things for the boys. They have been so thrilled about every single piece of mail they've gotten. I sincerely want to hug each one of you for the amount of comfort this barrage of mail has provided for ALL of us. Thank you thank you thank you! Maggie, your card was particularly moving and thoughtful.

I have to share with you this one special gift we received right before we left for vacation last week. A friend (Hi, Christine!) of a friend (Hi, Alise!) sent us some worry stones that she makes herself. (Check out her website to see more!) Some of the stones have Elijah's name on them. Some have fun drawings. And some have the word I have always used to describe Elijah in medical situations--STEADFAST. Whenever I need to turn off my fear and start focusing on positive thoughts, that is where I start. It holds a lot of meaning for me. Thank you, Christine! The boys have treated the stones like they are precious jewels. In fact, there is a batch of them in a glass jar in my refrigerator right now. I asked Elijah what was going on and he said, "Oh, PLEASE don't touch those! My stone soup is cooking." :)

One more piece of news and I'll sign off. Elijah lost his fourth tooth last night, literally 5 minutes after we had gotten home! The Tooth Fairy was very nice to him, and he looks adorable with his two top front teeth missing. That will be my next picture! Thanks for checking in..

Week of recovery (for Mom)

The week for Elijah has been just as normal as can be! That boy is unfazed and always spunky and positive. His attitude is a constant reminder for me of what kind of attitude I should have! A couple times since Monday I have mentioned to him that we need to start getting used to the "scary mask" since we will need to see it again soon. Elijah responds with, "NO SCARY MASK!" We brought one home with us, and at first he wanted to flush it down the toilet. I have seen him checking it out a few times since and finally talked him into putting it on Lamby. He agreed, but refused to smile (even though you can tell he wanted to).

Life for Dan and me this week has been a little bit sad. I cried a lot for the first two days and nights after we found out about the newest "thing." Then yesterday morning I woke up MAD. Elijah doesn't deserve all of this! I felt like I wanted to punch and kick the cr@p out of a punching bag. So I think I will do that soon. :) I refuse to go back to the dark place I was at two years ago when we found out about his third open heart surgery. I will not go back there, I will not, I will not!

One of the boys' favorite things to do is play Disney Junior games on my computer. Most of the time they sit nicely next to each other. Today was one of those times, so I took a series of cute photos.

Silly brothers.

This is my fault. I told them to kiss each other, so they did. I hope this doesn't embarrass them one day.

Here are a few pics from the hospital that I didn't get a chance to post. The new hospital family waiting area is AMAZING. Elijah loves driving around in these little cars. One of these next times he isn't going to fit in them anymore, but for now they are still tons of fun!

Elijah's little Lamby is his favorite "guy" (girl?) right now. He adores her, and I think it is so cute and sweet. He introduced her to everyone he encountered in the hospital, and not one person mentioned the fact that maybe she was a girl's toy. I appreciated that.  

Here was our post-hospital pic when Dan was picking Sammy up from Grandpa's house. Notice how rested and happy Elijah looks? And how tired I look? Who was the one who got anesthesia?! :)

I was able to have a lunch date with my littlest love this week! Our little Sammy loves home and he loves his family just as much as we love him. On Monday when the rest of us were spending the day at the hospital, Sammy was spending time with his Auntie and Grandpa. He LOVES both of them dearly, but the following day I felt like he was upset with me. How dare you leave me for an entire day, mama! So I figured some one-on-one time was in order.

And here is the lovely scene that is our front yard right now. The ice that had built up on our driveway was so thick that it was nearly impossible to dig into. It has just kept growing and growing over this icy, snowy, cold winter, so Dan went to work on it and did a great job getting rid of the ice. Now it is an ice mountain in our yard! And literally overnight, our driveway is a skating rink again. You should see me carrying my 43-pound son to and from the bus on a sloped skating rink every morning, slipping and sliding all over the place. The kids on the bus must get a good laugh!

The boys have been saying and doing so many funny things lately, as they always are. I will save those for another post. For now, I must retreat to the couch for a bit before bed. Thanks for checking in! Have a great weekend!

Ear troubles

Today brought some news that we did not see coming. We thought we were bringing Elijah in for a routine follow-up for his dislodged/non-functioning left ear tube. We left the hospital with a four-hour surgery on our calendar in order to fix a congenital anomaly called cholesteatoma. Upon inspection, the ENT doctor could see a "mass" behind his eardrum that was yellowish in color. It was not fluid after all, as initially thought.

Thankfully radiology was having a light afternoon, so we scooted right on down to get a CT scan to get a closer look at the mass. He was such an incredibly brave boy today (minus operating room trauma that unfortunately only seems to get worse with time).

The doctor was very nice to us. He told us to walk up to his clinic on the fourth floor once the scan was done so he could review it and talk to us about it in between patients. This was a very generous offer, and we took him up on it.

What we learned is that Elijah was born with a congenital anomaly that did not present itself until recently (typical for this anomaly). Our ENT gives this particular diagnosis only ONCE per year, can you believe it? Cholesteatoma presents as a cyst that presses on the eardrum, and can cause recurring ear infections. This makes total sense since Elijah never had an ear infection until a year or so ago. Once he got his first one, they never seemed to stop and he has had some doozies!

The plan from here is to have a bigger surgery (3 to 4 hours long, depending on what is found) to remove the cyst. They can sometimes do this through the ear, but sometimes need to make an incision behind the ear. Sometimes this surgery will also involve a bit of reconstruction, as the mass can interfere with bone growth.

Hearing a doctor tell you that your child has a "mass" within the confines of his head is NOT fun. I had a little moment of panic when I thought I might lose it. I asked the doctor, "Should we be....worried?!" Somehow this seemed to be a safer way to ask, "Could this be malignant?" His answer was that the extent of our worry should be limited to having to put Elijah through yet another surgery and also that he could possibly suffer from permanent hearing loss. His words: "Will this kill him? No."

Today was a lot to digest, but we are doing ok with it. It's another hurdle and we will come out on the other side stronger than ever, and hopefully with a boy who is able to hear again! As always, Dan's and my biggest struggle has NOTHING to do with ourselves and everything to do with Elijah having to endure further anxiety and pain. That part of it SUCKS. It makes my mama heart hurt so badly for him. He definitely has his triggers that cause major anxiety, but 98% of the time he remains positive and happy. His main source of anxiety is the "scary mask" in the operating room and the subsequent sleeping. We brought a mask home with us today to help alleviate his fears. I am certain I will find it with holes poked into it or possibly in the trash or toilet sometime soon. He does NOT like that thing, and understandably so.

Our surgery date is set for April 23rd. Please pray for complete success and for as little pain and anxiety as possible for our boy. Thank you!

New pediatric cardiovascular center + lots of sobbing

I haven't mentioned the trip we made to Children's Hospital a while ago out of fear of sobbing like a child. Again. But with Elijah's surgery anniversary approaching and already being an emotional pregnant lady, I figure it is impossible to avoid sobbing, so..

Children's Hospital in Minneapolis recently completed construction on an incredible addition dedicated SOLELY to its pediatric cardiovascular patients. They hosted a grand opening reception, so the three of us drove into the city to check it out. Everything a heart patient could possibly need is now within one unit. Pre-op, catheterizations, surgery, recovery and short stay recovery are all in the same little spot. And patient rooms have been built with parents in mind, too, so no more begging for a sleep room at night. It is an amazing addition and we are really excited about it.

The first stop on the tour was the new Short Stay unit and I got particularly excited about this area. The "regular" Short Stay unit down on first floor is where Elijah has always gone after his heart caths and we haven't always had the best experiences there (not all bad, just not all good). It will be wonderful to have cardiac-only nurses and nice new private rooms, too, after his heart caths. I was practically skipping around the unit like a giddy little kid, and I wasn't AT ALL expecting the emotions that were about to sweep over me.

Our next stop was at a big room next door to short stay. At first all I was focusing on was Elijah because he recognized the things inside of that big room and he immediately started to panic. Dan picked him up and reassured him that nobody was going to hurt him, as I stepped into the big room to check it out by myself. I took one step in and...oh my, this is an OPERATING ROOM. Yes, I knew that before walking in, but the heaviness of it didn't hit me until I had stepped inside. This is the room where IT happens. And then I completely lost it. It wasn't just a few little tears sliding down my cheeks. It was a full-fledged sobbing that instantly shook me to the core. It was one of those sobs that you cannot control no matter how hard you try. A very nice nurse was in the room giving tours and she was immediately at my side, hugging and comforting me.

Standing in an operating room is extremely overwhelming, with all of the super high-tech equipment and monitors and lights and machines and instruments. And that table right in the middle. The table that my little boy has been on twice and will be on again soon. Past anxieties and current anxieties and everything in between shook my body and heart and soul without warning. Eventually I told myself that I had to stop the crying, after all, we were at a very public event, so I looked at the nurse square in the eyes and tried my hardest to carry on a conversation with her. At that moment, out of the corner of my eye I saw our beloved Dr. Gremmels walk into the room. I thought it was pretty cool that the one person in this world who knows EXACTLY what our son has been through (heart-wise), every little bit of it, showed up at that very significant moment. I kept it mostly together, but almost lost it again when I saw him. He came over and gave me a hug and reassured me that what I was feeling was normal. (Really? Because I don't see anyone else here freaking out!)

I pulled myself together and we toured the rest of the unit and we even ran into Elijah's heart surgeon, Dr. Moga. He told Elijah he was "lookin' good" and gave us his trademark smile and wink. Every time I see Dr. Moga I get emotional, but I was able to hold back the tears this time (probably because there were none left).

Not only is this new unit going to be a lot more convenient for patients and parents (and doctors), but it is a huge step toward keeping little heart patients healthier, as well. Patients will not need to enter the hospital's regular PICU after surgery, which will keep them protected from sicknesses that might be floating around down there. This will also free up bed space in the PICU for other children. Check out the virtual tour of the new cardiac patient rooms, which include private bathrooms, refrigerators, sofa sleepers, tvs and xbox 360s.

This new unit is a really big deal and we are really proud of it. We are grateful we were able to see the new area and we feel so blessed to live in a city with such amazing facilities, nurses, surgeons and doctors.

Perspective

I continue to feel like a basketcase today. This always happens. I take a crazy emotional roller coaster ride for a solid week following every surgery. I sat at my desk at work today constantly suppressing much-needed cry sessions. I heard someone gabbing on and on about the drama surrounding last night's Jon and Kate episode (I proudly know nothing about this show) and then I thought of all of the sick babies lying in hospital beds right now. Spending time in a children's hospital has a way of changing a person's perspective. Big time. When you see rows and rows of babies struggling to hold onto life, the little things no longer matter. TV shows, gossip, material possessions, none of that really matters.

I don't have any new pics, so I will choose another random set of numbers and grab an oldie from my archives. I picked my two favorite numbers, 23 and 11, which revealed this photo that was taken at my dad and stepmom's house in North Carolina in December of 2007..



Elijah is doing amazingly well. Like I said yesterday, you would never know what he has recently been through just by looking at him. He is tearing all over the place, being as spunky and funny as ever. He does this thing where he puts random things on his head (crackers, books, cars, whatever is in his hands) and yells, "HAT!" It makes us laugh, so he does it a lot. Today he was putting his cookie on his head and doing this. Then he decided that his cup of milk needed a hat, too, so he balanced the cookie on the cup and said, "HAT!" I love my silly kid.

More random numbers (9 and 18) revealed this photo, taken in October 2008 in the back of our friends Katie and Drew's (parked) truck..



I haven't mentioned that the hearing test that we had planned on having done during surgery never ended up happening. The surgery went so quickly that there wouldn't have been time for it anyway. We did get the immunology and allergy results read to us very quickly in a manner in which I did not fully understand, so I will follow up with Elijah's pediatrician about these. It was something like: one of his numbers came back low which typically indicates a susceptibility to allergies, but that he doesn't currently have allergies. Details to come on that..

Oh, and do you know what is crazy? We don't even do our neurosurgery follow-ups with Elijah's neurosurgeon. That guy is literally just involved in the surgeries. We follow up with The Voice in 3-6 months. Another crazy thing is that a repaired tethered spinal cord can re-tether. That is something to definitely pray against.

It is super hot and humid out today, so we are enjoying an evening inside. Please pray for continued good recovery for our precious little boy, and also for healing, health and peace for all of the babies/families at Children's Hospital right now.

BYE BYE (Elijah's favorite thing to say to doctors and nurses)

Did you say HOME?!

We made it home around noon today. It is so unbelievably nice to be out of the hospital. We ate lunch and took naps after getting home. I had been planning on going into work for at least a little bit today but I'm glad I didn't. I spent a lot of my awake time this afternoon crying and experiencing many mixed emotions that I'm sure my coworkers wouldn't enjoy experiencing with me.


Our quaint little 6th floor (side of the) room.

I was reminded how emotional I get after we get home from a surgery and hospital stay. I keep looking at Elijah, who you would never in a million years know just had major surgery, with total disbelief. His strength never stops amazing me. I keep thinking of the moments in the past week when I felt like it couldn't possibly get any worse and when I felt so overwhelmed and exhausted all I wanted to do was scream and cry. I keep thinking of all of the sick children in that hospital and I feel sadness that so many families have to suffer the hardship of having a sick child. I keep thinking about how different things are now. They always are. The three of us have endured yet another battle together, and we are even closer than we were before. I feel relieved that we have yet another challenge behind us. I feel overwhelmed about all of the love and prayers that have been sent our way in the past few days. As I look at yet another scar on my little boy's body, I feel sadness that he has had to endure so much. I feel exhausted.


Watching some tv before discharge.

I experienced some of my lowest moments during this hospital experience. This is something I didn't expect at all. Going into it, Dan and I figured that since it wasn't a heart surgery that it would be a piece of cake. Overall, it wasn't as intense as his heart surgery recoveries have been, but it definitely was no piece of cake. I am so happy to be done with this particular adventure. Onto other things!


Elijah is totally in love with the trucks that were sent to him at the hospital right before we left. Karen, the care package was so super thoughtful and sweet. Thank you soo much! Honestly, Elijah hasn't put the trucks down since he saw them. As I was getting them out of the packaging, he impatiently said, "GUCK GUCK GUCK" (translated: truck truck truck), until they were in his eager hands. The treats are great, too. Thank you so much!! We had a few other little presents/cards waiting for us in the mail that made me shed a few thankful tears.

Dan is heading to softball (no idea how he has energy for this), Elijah is heading to bed and I am heading upstairs to take a much-needed bath. I can't remember the last time I showered, so it will feel nice not to smell like dirty feet anymore.

Again, thank you to all of you for all of your prayers and love and for checking in on our sweet boy. We are so very thankful for everything.