On tattoos and turning 40

A few months ago I shared with Sarah (my amazing heart mama friend who hosted us in Kentucky) that I would be turning 40 this month. She asked if I would be interested in getting a tattoo with her while we were in KY to commemorate the big birthday. Um, YES! She had an awesome idea for hers, so I began pondering what I wanted to get.

I don't think it's any secret that I spend a lot of my time and energy worrying about our oldest boy. Since Elijah has been born, I have been given a handful of promises that I need to constantly remind myself about. I KNOW that everything is going to be ok.. Elijah assured me of that the day he was born, the first time I saw him, through unspoken words. I looked at him and I knew. His dark eyes told me, "It's going to be ok, Mama!" I have also been given this promise through a few dreams which I have cherished every day since I had them. He is going to be ok. We are going to be ok.

But I am human and sometimes I get caught up in fear and consumed with worry. I shake myself and say, "The promises! Remember the promises!" It is sooo hard sometimes. I have always had the thought that I should tuck a piece of paper with a few of my favorite Bible verses in my pocket every single day. At first I thought I would get Hebrews 11:1 as a tattoo, as this is one of my go-to faith verses. Then I had an idea.

I searched through my photos and found a picture I had taken of Elijah's heart monitor minutes into his recovery after open heart surgery #2 (the big one). I traced his heartbeat from the monitor and and added a cross at the end. It's my reminder of Elijah's strength and steadfastness, combined with my faith in the promises God has given to me/us that we are going to survive this journey! I chose to put it in a place where I can see it often, and only a few weeks after having it I can say that it has already helped me. I LOVE IT.

A few people have said to me, "But what about a Sammy tattoo?!" And I reply with, "God gave me a natural Sammy tattoo!" It's true! Sammy and I have strangely similar (and very unique) birthmarks and I love this so much. Mine is on the side of my knee and Sammy's is on the side of his elbow. As a kid, I hated my birthmark, but now I LOVE it. It's another little special connection I have with my awesome Sammy Jammy. (Sammy's is on the left and mine is on the right.)

My boys have given me a three-day birthday extravaganza, involving time with the little boys, time alone, time with just Dan and time with all of my boys. Every moment has been filled with tons of love. My boys are the best! Today the four of us went to Valleyfair and had such a fun time. I have loved the past few days and even though 40 seems a little bit scary, I'm ready to tackle it. The decade of forty is going to be AWESOME.

Absence

I haven't updated our little blog recently for several reasons. The first reason is a good one! We are owners of a new (used, but very awesome and livable) trailer at the dropzone! The dropzone is a getaway place for all of us (except for Dan during working hours), so I tend to not bring my computer or "work" of any kind out there with me. Here are Elijah and Sammy enjoying their first lunch in our second "home!"



Elijah LOVES our trailer. We stayed in it for two nights over the long weekend and since returning home we have heard him say, "Go dwopzone? Go to new tway-er?" somewhere around 500 times.



Another reason I haven't written much lately is because when I'm not working or caring for boys, I have been sleeping! No, I'm not pregnant. :) I feel like I have finally reached the point of being emotionally and otherwise exhausted. Hopefully I can feel somewhat caught up by next Friday.

And the most obvious reason...there are a lot of emotions surrounding this time that I am honestly just tired of dealing with. I'm tired of crying and worrying and being a mess. I want to get past this surgery, but more than that I want to run backwards up my calendar. I know, people go through this, or worse, all the time. Something I've learned, though, is that that doesn't make my feelings any less real.

Sammy's first birthday is on Saturday and I'm doing my best to make sure it is a fun day. I cannot believe our little munchkin will be one already! What the heck happened to that time? Sam has been such a chubby ball of sunshine for us. The way he shovels food into his mouth by the fistful and the way he clacks his tongue and then does his cute squinty smile-laugh and the way he has to find a ball (BAA!) in every room we enter and the way he nuzzles his entire body into my lap and sucks his left thumb when he's tired...all of it makes me smile and feel so grateful! I love that little boy!

We plan to spend more time in our new "tway-er" this weekend, so you may not hear from us until next week...THE WEEK! Yikes!

Anticipation

One of the things I've learned in the past few weeks is that when you really really really don't want a specific date to arrive, it comes very quickly! Elijah's surgery is in just over three weeks (not that I'm counting), and I'll be honest...most of the time I am not dealing with that very well. I often sit down to write a post but can think of nothing but anxious and worrisome things to write about, so I head to the kitchen and cook instead! :)

I have a few constant reminders in my everyday life telling me that everything will be ok. I need to hold tightly to those things, but sometimes it's easy not to do that. The anticipation of this surgery is a totally new experience for me. I hate everything about it. And since Elijah isn't experiencing any physical symptoms like he was before his last two, it's easy to convince myself that he's just fine. That he doesn't really need it.

But he does! And he will be in good hands. The best hands! And I just have to find peace with the fact that we have done everything humanly possible. The rest is nothing we can control!

Ok, so now that you all know how crazy I am, I can update you on the "normal" things that are going on! Elijah is coughing a bit still from last week's sickness. Sammy woke up this morning with a new sickness. He looks so tired and worn out, poor guy. :( The weather is finally GORGEOUS. I'm tired, always so so tired. Dan is starting to work more at the dropzone, which is both good (money) and bad (we miss him). Oh, and Dan and I got out for our anniversary last weekend despite boy sickness! That's about all for now. Thanks for checking in!

Quuuue seraaaa seraaaa

Sammy, I know you're probably going to be mad at me one day for showing the world your cute, chubby bottom, but honestly...can you blame me? It is the cutest! And look at those legs!



I have no idea what happened to this week. It is suddenly Friday! And sunny! We don't have huge weekend plans. Dan will be working, weather permitting, and the boys and I will be chillin'. Maybe we'll get out and do something fun.

We don't have much to report, which I suppose is good! On Monday Elijah gets his laryngoscopy procedure (my tummy turned as I typed that), so hopefully we will have GOOD news to report after that.

Have a good weekend! Thanks for checking in.

King for a day

Last Friday was Elijah's special Heart Day, so we ordered pizza and let him eat in the living room while we watched a movie (Megamind) and as he held tightly onto one of the heart balloons Dan picked up for him.



Then he got a special dessert, topped with a cherry.



I asked him a few times if he knew why we were celebrating and he said, "Elijah's heart surgery."



Well, it has been a much better week in some areas and a crappy one in others. Does anyone ever achieve total balance and harmony? Let me rephrase that. Does anyone with a full-time job, two little boys, a house, a husband and two blogs ever achieve total balance and harmony?

Elijah's surgery will occur exactly seven weeks from today. I don't feel ready in any regard, but this is something I will never feel ready for. We have some things to figure out before it happens, and I have been praying hard for nothing but good, reassuring news. His laryngoscopy is scheduled for May 2nd. I have all kinds of knots in my tummy about that day and about what Dr. S will "find" down in our boy's croup-prone airway.

Tomorrow we have a wedding to attend and Sunday we will celebrate Easter with family (and food!). Elijah has some adorable bunny ears to show you all. I'll snap a few pics this weekend.

Happy Easter, everyone!

Where's the snow??

Sam sat outside and looked around like, WHAT IS THIS?



Elijah excitedly pointed out birds to me. Wook, Mom, a BIRD! Thank goodness for this tiny taste of spring. I need spring. We all need spring.



Sammy did his first sign last night! He pushed his bottle away and I said, "Do you want more bottle or are you all done?" and he did the sign for ALL DONE. That was Elijah's first sign, too!



We had some rough patches with Elijah over the weekend. The sass and drama that can come from that boy gets ridiculous at times. Dan and I got to the point where we had a zero tolerance level for whining. If he whined, he went straight to his room. Then, there were other times that I couldn't believe how sweet he was. "Mommy, come snuggle on the couch wif me!" Or a random, "I wuv you, Mom."



Sammy is crawling everywhere and he is even pulling himself to a stand and then trying to stand on his own. He is ready to RUN. We have found him at the bottom of the stairs, looking up, crying because he doesn't know how to climb them yet.

I have been feeling extra vulnerable lately about Elijah's upcoming surgery. The bad thoughts creep in too often, and I don't deal with them very well. I want this surgery to go away. I don't feel ready to face it. I haven't found peace yet, although I'm trying so so hard. Please God, protect our little boy! That's something I say under my breath at least once every five minutes.

Dan starts night/weekend work soon and I'm feeling down about that, too. I want that reality to go away, as well.

I'm hoping spring will improve moods and emotions all-around!

A gentle doctor

My prayers were answered yesterday. Dr. S, Elijah's ENT doctor, was very gentle. After chatting with us for a few minutes, he said what I expected him to say. We need to get Elijah in for a bronchoscopy-laryngoscopy before his open heart surgery. If there is something serious going on with his airway, we will need to know about it before then. I am doing my best not to think too far ahead.

I envision the next four months to be a gigantic pyramid holding many steps. Climbing the steps is not going to be easy, or fun, but most definitely necessary. And we will have to take the steps one at a time, and try not to worry about how out of breath we will be in the upper quadrant.

Of course there can't be an appointment without an Elijah Funny, right? We were chatting with Dr. S and he asked who E's cardiologist and primary docs were. We told him their names and he gushed about both of them. He said, "Elijah is in THE BEST hands, honestly. You just cannot beat those two doctors. Not possible." We agreed with him and told him how much we love them both. Then Dr. S said jokingly, "Now, Elijah's ENT doctor on the other haaaand..." And right on cue, without missing a beat and as if he totally got the joke but didn't really think it was funny, Elijah let out this HAhahahaha super fakey laugh. It was great.

The final word from Dr. S was that he is concerned. Elijah's tendency to get severe croup post-extubation is a serious situation. But, like Dr. S said, he is in good hands. The best. We are taking the necessary steps to keep our boy safe and that is all we can do. We have an appointment with Dr. K, Elijah's pulmonologist, in a few weeks, so we will get his thoughts, as well. Add Dr. K to that list of the absolute best doctors, by the way.

I have a hunch about all of this. I don't feel like Dr. S will find anything serious in Elijah's airway. I feel like it will be slightly narrowed, possibly due to scar tissue from all of his intubations, but I don't feel like it will require intervention at this point. When Elijah gets out of breath, he doesn't wheeze or struggle beyond what he should. He never sounds croupy unless he is sick or unless he has been intubated. That is a very good sign.

His bronchoscopy-laryngoscopy is scheduled for May 2nd. So, within the next month or so we should have a better handle on the croup worries surrounding Elijah's upcoming surgery.

One step at a time!

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!
Love,
Mama

H1N1

I just found out that my 10-year-old niece, Emma, has been diagnosed with the H1N1 virus. It sounds like she is on the road to recovery and doing fine. Get better quickly, Emma! We love you!

Now, I know that this whole swine flu thing has involved a lot of hype and freak-out tactics from the media, but I am worried. Thousands and thousands of people die from the "regular" flu every year, but do you know who that typically involves? Children (and elderly people) who do not get a flu shot and who have underlying medical conditions. As we wait for the H1N1 vaccination to be released, Elijah fits into that very description.

This stupid swine flu is a huge black cloud hanging over my life right now. Dan and I have always strongly believed that keeping Elijah in a bubble is not the way we want to live. We have always been careful with hand washing and hygiene, but we typically don't avoid public places out of a fear of germs.

I just don't know if I should be as scared as I am about all of this. I have no idea how Elijah's body, already working extra hard and already so susceptible to illness, would handle this virus if he were to catch it.

We heard yesterday that the H1N1 vaccinations won't be ready for distribution until the end of November. Now that the virus is much more widespread and now that flu season is basically here, should we keep Elijah out of daycare until then? Should we avoid church? Should I cancel our trip we plan to be taking on an airplane in a few weeks? Should we keep from bringing him to the grocery store? Or do we go on living our lives like we always have and pray that everything will be ok? These are questions I ask myself about every 30 seconds.

Never a dull moment

Elijah was having a great day until about a half hour ago when we noticed his heart rate was quite a bit higher than it normally is. He's been getting every diuretic under the sun today in an attempt to dry him out, so we thought maybe he got too dry? But no, that's not it. He has consumed a lot of fluids today so he definitely cannot be dry. So we really don't know what's going on. We just have to watch and wait and see what happens.

The IV in his neck started leaking a bit, so our nurse tried to change the dressing but our sweet Elijah became Monster Crazy Psycho Elijah! :( I hate seeing him so so mad and throwing a fit and flopping around like a fish. He definitely has his strength right now, that's for sure! I think the nurse decided he would give him a half dose of morphine and try again. Ug!! I may have to leave the room for that one.

During the time I've written this post, his heart rate has gone back down to the 140s (it was in the 160s earlier and normally he's around 120-130s). Who knows! We had him propped up for a bit so maybe his body didn't like that?! His body has been through so much, so who knows what it's going through right now.

I think being in the hospital is starting to take its toll. I was close to tears when his heart rate got high. UG! We're just really weary and tired, but doing our best to keep chugging along!

We received so many nice things today! Elijah is so loved. Our wonderful friends Pam and Grant (and cute Jetson) brought us lunch and some cute little gifts. I will post pics later of all of Elijah's new balloons and some new things that our wonderful heart mom friend Kathy sent us! Thank you Kathy and family!! And thanks P&G for lunch and the sweet gifts.

Blood sweat and tears

Our tired boy in the hospital on Thursday, after all the poking and prodding he endured while in the ER.

I won't lie, it's been rough around here. We're dealing with a very sick kid with a fluctuating, mostly high fever and our emotions are all over the place. Dan forced me to take a long bath tonight after we put Elijah to bed and thank goodness for that because I think it increased my sanity points just enough to make it through the rest of the evening. (And he's out getting my favorite take-out for us right now. What a wonderful hubby!) Here's a video of Elijah yesterday after we got home from the hospital after his temperature sky-rocketed to a scary number:



Elijah's temp fluctuated throughout the day today. When we put him to bed it was 101.3 (kdwb! sorry, I'm a little weird right now.). He was pretty tired and warm and crabby most of the day but he just has this underlying strength that we can sense and that makes us feel better about things. He is SO STRONG. I can't believe what his body is going through right now but he can still laugh and babble and act like a ham. This kid is absolutely amazing. And I'm not just saying that because he's my son. He is seriously amazing!

You should have seen us today. We were a well-oiled machine. We constantly had two pillows sitting on the window sill, cooling off (because it is still COLD here in Minnesota). We would take turns holding Elijah with one of the cooled pillows underneath him because we didn't want our body heat to affect his fever. We fed him juice and milk through the day, as much as he would take. We even fed him some solids and he took those pretty well. We watched A LOT of Veggie Tales, because that was one of the only things that kept him happy. I'm going to have Veggie Tales songs in my head forever.

As I took my bath tonight, an important thought came to mind. I thought of the prayer that Dan said today while we were in the midst of emotional turmoil. He asked God for GRACE and PEACE and for HIM to take this burden off our shoulders. It's so simple. We let God handle this. We do the best we can with Elijah. We take care of him the best we know how and God will take care of the rest. He has a plan for Elijah and we have to trust in that. It's that simple (as Veggie Tales will tell you!). All we need to do is take it one day at a time. We got through this day ok and tomorrow we will concentrate on that day. That's all we can do right now.

I have no idea what the future has in store. Things seem so complicated right now but I know that somehow, everything will be ok. Elijah is SO STRONG. He is going to be ok.

We've received so much love and support from our family and friends. THANK YOU ALL SO MUCH. We love you. Thanks for checking in and for leaving uplifting comments. The comments make our day!! xoxoxoxo


Reading books from baby Wilson! Thank you so much, he just adores the NO/YES and HAPPY/SAD books. They are wonderful!


Taking it easy in the LoveSac. Look at that giant tummy! I love it so much!

Sick sick sick

We did everything in our power to lower Elijah's temp yesterday. At 1:30 his temp was 103.6 and by bedtime we had it down to 100.2. We woke him up every four hours to give him tylenol and continue checking his temp. I just put him down for a nap and he was at 98.8. Thank God. And let's hope we can keep it from coming back. This fever has me totally freaked out.

We are walking a very fine line. Dan and I need to be constantly on our toes right now. We have to make sure Elijah isn't too hot or his fever will spiral out of control. We have to make sure he isn't too cold or he'll have another blue spell. We have to keep a close eye on his breathing and on the color of his lips and on his eating and drinking liquids. I feel so frazzled with all of this going on and with surgery quickly approaching. It is more obvious every day that his heart is READY to be fixed. We can't put it off much longer, but we need him healthy before we can do it. All I can do is pray that it will all work out.

Our house has a very somber mood right now. Dan and I are sleep-deprived and scared and we're doing our very best to get Elijah healthy. I'm hoping we're on the tail end of this nasty fever and that he will only get better from here!

I have some cute pics to share but I'm too tired right now. I think I'll go try to sleep while the chunky monkey is sleeping. Thanks for checking in and for all of the prayers!! They have helped!

From the horse's mouth

Dr. Gremmels called me back right away this morning THANK GOD. I wasn't up for another day of totally freaking out (now it will be a day of only mildly freaking out). He said Dr. Wright had filled him in on what happened over the weekend and I asked him what he thought of those 30s, 40s and 50s sats we saw on Saturday night. He said that as long as he was steadily in the 60s while sleeping, he isn't worried. Pulse oximeters (the devices that measure blood-oxygen saturations) lose accuracy once they go below 60%. Basically, a 39% reading is the same as a 59% reading. Dr. Wright said basically this same exact thing to us on Saturday, but (sorry, Dr. W) hearing it from Dr. G carried more weight.

So now I'm not so freaked out about those really low sats. That's good because that was one of my main worries. Dr. G said that since Elijah has had a cold, he's not in a rush to get him into surgery. He wants to talk to Dr. Moga and see what the schedule for the end of the week is like, but he feels like the 15th will be just fine for a surgery date.

The only thing Dr. G sounded even slightly worried about was the fact that Elijah gets more lethargic and more purple in the evenings. If this gets increasingly worse tonight, we're supposed to call him tomorrow. If it doesn't get worse, we're supposed to call him on Wednesday. From there we will decide what the plan will be.

I wonder if the doctors who know our little ones so well understand how important their opinions are to us. I feel so much better after talking to our beloved Dr. Gremmels. I think he should move in with us! He can bring his family, too, that's fine. We'd be nice and cozy and we could call ourselves the Pormmels.

My heart is still breaking for Helena's parents. I can't imagine what they must be feeling right now. If you wouldn't mind, say a prayer for PEACE for both of them!

Tough but good day

Today has been draining, but it's good that we are home! Elijah's sats were pretty consistenly running above 60% when we left the hospital and Dr. Wright was happy with that. The most important thing was that throughout the night, when Elijah wasn't moving and the oxygen sats were the most accurate, he never dipped below 60% and even went as high as 75%. This is a very good sign.

We got home and all of us were COMPLETELY exhausted. I don't know if I've ever felt this level of emotional and physical fatigue before. Last night was one of the scariest nights I've ever experienced and it definitely took its toll. Elijah has always been so steadfast with everything he has endured, so seeing O2 sats of 36% was difficult for me. This morning, as we were excitedly preparing to leave the hospital, we heard about an emergency in the PICU that all the cardiologists had to attend to (and the reason we weren't discharged sooner). When we heard of this, we were totally patient with waiting because an emergency is much more important than we were. We eventually got discharged and later learned that that emergency situation was a baby that we know of through a friend, another heart baby who was recovering from her third open heart surgery. I have been following Helena's story since I was pregnant with Elijah and this little girl was strong! Well, she passed away today, and when I found out about it, I broke. It's just too much, with everything else we've been through over the weekend. I can't believe she's gone. My heart goes out to her parents and I've been crying for them all day.

Anyway, we got home today and Dan being the wonderful husband that he is, made me take a nap. We had agreed that I would sleep for a while and then he would sleep for a while and then we'd make dinner and put Elijah to bed. Well, I laid down at 12:30 and I didn't wake up for almost THREE HOURS! I totally crashed and when I woke up I didn't even know where I was, what time of the day it was, what was going on?!? I felt so bad! I infringed on my hubby's nap time! Elijah went down for his third nap of the day at 1:45 and at 4:45 I decided I should wake him up so he would sleep through the night. He didn't eat much of his dinner and drank just a little of his bottle (and of course I'm over-thinking that). He was SO TIRED. Poor kid, he hardly slept a wink last night. The hospital is not good for sleep for anyone. Dan cooked a yummy dinner for us tonight that was awesome! Mmmmmmmm, spicy fajitas. My hubby is the best!

So now we're going to bed. Even though I slept for three hours today, I feel like I haven't slept in a week. I am hoping we can all catch up tonight and feel refreshed in the morning! Dr. Gremmels is "away" on a business trip tomorrow, but I've decided that I'm going to call his nurse and ask that he call me back because I would feel so much better talking to him about everything that has happened this weekend.

Thanks so much for your comments that you leave and the prayers that you've said for Elijah. You have no idea how much this means to us! We love you all so much! Please continue to keep our precious man in your prayers. He is in a fragile state right now and needs to be healthy enough for surgery on the 15th.

Hope

Thanks for all of the wonderful words of encouragement, my friends (and thanks for the sweet phone call, Samantha. you have such a cute southern accent!). I am coming to terms with knowing that I just will not be ok with what is happening TWO WEEKS FROM TODAY, and that is fine and normal. No matter how deeply I believe that everything is going to be good in the end (because I do deeply believe that), it is natural for me, the mama, to worry and to not be ok with this. It goes against human instinct to imagine handing your baby over for surgery. The anticipation is the worst part of this whole thing. Soon the surgery will be here and we can get on with it and help our man recover and things will look much brighter.

Dan sent this to me today (he receives these passages daily but today's was very fitting!):

He Delivers You From All

"Many are the afflictions of the righteous, But the LORD delivers him out of them all" (Psalm 34:19).

Aren't you glad we serve a Deliverer today? An affliction is defined as the cause of persistent pain or distress. You might feel afflicted today, but God is working to bring you out of that difficult situation. It may not be in the way you thought, but you have to trust that God has your best interest at heart. I know that afflictions can take on many forms—a sickness or hardship, a temptation, a coworker or family member. There are so many things that can come against us, but God promises in His Word that no weapon formed against us shall prosper! Those afflictions are only temporary. Stand in faith believing that God is on your side. Remember, you and God are a majority. It doesn't matter what your circumstances look like, get up every morning and say, "This is the day that the Lord has made, I will rejoice and be glad in it." As you stand and trust the Lord, He will deliver you out of all your afflictions, and you'll see His hand of blessing in every area of your life.


And then I saw this:



Warm weather! And sun!

I was looking at my calendar this morning, and tell me if you think this is as weird as I think it is?! Elijah turned 12 months old the day of the cool lunar eclipse. He turned 13 months old on the first day of spring. His surgery is on Tax Day. There will be a full moon the day he turns 14 months old. There will be a full moon the day he turns 15 months old. The day he turns 16 months old is the first day of summer.

What's with all the strangely significant days coinciding with Elijah's significant days?