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!

Fever

Dr. Sutton discharged us from the hospital today because they were doing absolutely nothing for us besides making sure we all got horrible sleep. Elijah's temp was down when we left, all his tests came back negative and his sats were holding steady. We put him down for a nice long nap when we got home and when he woke up he had a fever of 103.6!!! He is totally burning up. I have a call into Dr. Sutton to see if he wants him to come back in or if we should monitor this from home.

ELIJAH!! Stop freaking Mama out! I'm going to have a heart attack soon. I have no idea what could be causing this fever. It's a mystery. In my gut, I'm thinking surgery might need to be postponed. We'll see what Dr. S decides and what these next few days will bring.

Please pray for our man! NO MORE FEVER and no more sickness!

Update: Dr. S called back and said to try to get past this fever at home, unless his color starts to change drastically. There is nothing they could do for us there that we can't do here, unless he ends up needing oxygen. Hopefully it goes down very soon so our chunky man can start feeling better. Poor guy, babies shouldn't be allowed to be sick. :(

Quick update

Elijah has been sleeping peacefully since about 6:30 or so. Our night nurse told us that he saw FOUR written orders NOT TO WAKE ELIJAH UP FOR ANYTHING. This is music to our ears. His sats have been running consistently above the 60s since he's been asleep and this is great news. Dan and I had a hospital date night tonight and we got authentic Mexican food and watched a movie on our laptop. Fun!! Now we are headed to bed on the two-foot couch we get to sleep on. Please continue to pray for our sweet boy. We might be here a while and we all need courage and rest. Thank you!

ps. Dan here, just thought you should know that Megan is soooo hot in scrubs!!!

El hospital

So much for not being in the hospital. We're back!

Elijah and I were having a nice, quiet day by ourselves at home when he decided to scare the CRAP out of me. I had just fed him lunch and laid him on the ground to change his diaper. He looked like he was a bit cold and shivered and then a split second later he was PURPLE and screaming. I picked him up and tried to warm him up but his color just kept getting worse and he started getting listless and acting funny. After 10ish minutes of this, I finally called 911 and the paramedics came and by that time he was fine (of course). They left and we called Dr. G and he told us to get to the hospital right away.

We spent the first 2.5 hours in the ER, which was horrible for our little man. They poked and xrayed and tested pretty much the entire time and he was MAD. If anyone with a blue coat even walked into the room, he screamed his head off. His sats are running really low. When he's mad, they're running between 25-50%. When he's content, he's running between 50-65%.

Dr. G stopped in briefly but was on his way to the airport (No! He's leaving us again!) and said that he wants to have Eli monitored here in the hospital for probably 48 hours. We are hoping that his low sats and the purple spell today are a result of this cold that he's hanging onto. They ran every test under the sun downstairs so hopefully we can rule things like RSV out. So far we know he does not have an ear infection and he does not have a bladder infection.

Right now we are back up to our usual 3rd floor spot, watching the snow fall outside! I made Dr. G promise that we wouldn't have to deal with nurses coming in through the night to check vital signs and waking him up constantly, so hopefully he can actually get some sleep tonight. Dan is feeding him right now and then we're going to try to put him to sleep. He is SO TIRED.

I think we will get to see Dr. Moga tomorrow and hopefully he'll give us an idea about whether or not we should reschedule surgery or not. NO RESCHEDULING!! We are praying that this is just a cold and that it's on it's way out. I forgot to mention that E's temp has been pretty high all day (as high as 101.8) but now it is back down to normal, thank GOD.

Ok, off to baby duty. Please pray for our boy! Thank you for checking in.

Short-lived

Look at that big belly! I laugh every time I look at this pic. Can you tell Daddy dressed him today? And that shirt is a bit small, huh?

Elijah's good health was very short-lived. I just knew that throw-up session last night meant something. He woke up this morning full of snot (again) and he had a pretty crabby day overall. I took his temp before putting him to bed and he was at 101.2! Yuck! We talked to the on-call cardiologist and he said just to keep a close eye on him through the night. If his temp is still that high tomorrow, I'll bring him in to get checked out to make sure he doesn't have something more than just a cold.

We seem to be walking such a fine line right now and it's getting a bit scary. We are trying to be as positive as possible because we just know it's all going to be ok in the end. God has a special plan for our little man and we know that. We just have to chug along for a little bit longer. Please pray for our Elijah. He NEEDS good health so we can get his heart all fixed up, and his heart is so so ready to be fixed.

Here's my list of GOOD things to be thankful for today:
We're not in the hospital.
Elijah is chunky.
E felt better yesterday, so we know he CAN get to the point of feeling better again (and he will soon, dangit).
E didn't throw up all day!
I got to snuggle E up tonight and I loved it.
I have the world's best employer.
We got approved for the RSV shot (after mucho complaining and with my employer backing me up).
Dan gets to go to work tomorrow and I'm so excited for him to get out a bit and not spend another entire day with a sick baby.
We are going to get out a bit Friday night after E goes to bed. We are in serious need of that.
It's not 10 degrees outside and the snow is almost all gone! Wwooohhoo!
I have THE world's best husband, hands down.
(I asked Dan to tell me something he's thankful for today and he said, "Your legs." I told him I couldn't write that and to tell me something else. He said, "Fine, your lips." I gave him a funny look so he thought for a second and then said, "Baby laughter.")

I'm not going into work tomorrow or Friday and it feels so good knowing I can be here with Elijah all day long to give him as much mommy love as I possibly can. Mommy love cures everything!


Checking out the new chair. He looks so cute in it!

I forgot to mention that I did call Dr. G today but he wasn't in the office so he's going to call me first thing in the morning. We'll see what he thinks about this sickness and whether or not we'll have to reschedule surgery. NOooooo!!!!

Better today. Can you tell?

By the end of yesterday, I was wondering if I could possibly feel any worse. I woke up this morning feeling much better and I'm actually not feeling like this might be the end of the world. Elijah appears to be getting over his cold and it's so nice to see his personality come back a bit instead of the crabby, snotty, tired wailing we've been enduring for the past 10 days. Tonight he threw up after dinner which has me nervous because usually a throw-up indicates a sickness to come (or teeth, and he has sprouted FOUR of them at the same time in the past day, so who knows..). Oh please please PLEASE, no more sickness! We need to get him into surgery and get him better. His heart is so ready to be fixed.

I have been feeling really bad recently for not being able to spend considerable time with Elijah before his surgery. I've just had kind of an itchy feeling at work all week, like, this isn't where I should be right now! I talked to my bosses and they agreed that I should be home with Elijah right now if that's what I'm feeling is right. I have a few projects to finish up tomorrow morning and then I'm taking the rest of the week off to spend with my chubby boy. I need this time with him so badly right now. I am just going to chew him up. He's going to be so tired of Mommy by the weekend.

You can see for yourself how much better Elijah is feeling. This is the beautiful, smiley face that I came home to today.











Have I mentioned what a big flirt he was in the hospital last weekend? He's shameless! We walked him down the hallway in a stroller a few times to get out of our room and he would look from side to side at all the pretty nurses like, yeah, I'm pretty cute! He kept babbling and wanted desperately to be the center of attention. Almost everyone mistook him for a girl in the hospital. It's those pretty curls and big eyes. Dan wants to cut his hair (for this reason) but I don't!

We have had some issues with our insurance company this week. They refused to pay for this month's RSV shot, which is completely stupid, so we had our doctors call in to back us up. We'll see what happens, but Dr. G said that he wasn't too concerned if he didn't receive this last shot. I'd like for him to be able to get it, but we'll see what happens. Insurance companies make me mad.

I'm calling Dr. G in the morning, because he told me to, so I'll post again when we have a plan. I am guessing that unless Elijah gets sick again (please God, NO!), we'll plan for surgery on the 15th! Here we go!!

Thank you, everyone, for the kind words, the encouraging comments and all the love and prayers you have sent our way. We couldn't feel more supported and loved right now by our family and friends. You all are wonderful! And thank you for praying for Helena's parents, too. Please continue to do so. They are grieving the loss of their beautiful little girl. I cannot fathom their pain.

Also, please pray for baby Micah. He has a surgery tomorrow to get a g-button placed in his tummy because of some feeding issues he's been having. Also, little Logan is having heart surgery tomorrow and another one next week. And Emma is re-re-reschuled to have her open heart surgery on Friday, so say some prayers for her! It is the week of the surgeries for all my precious heart babies!

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.

Home!

We finally saw the cardiologist (it was a busy morning there) and he said that he saw what he wanted to as far as Elijah's Sat's over the last 12-15 hours. Since they were relatively good (mid 60's) while he was totally at rest and his hemoglobin was right where it should be Dr. Wright saw no need to move up the surgery date or keep us there. So we're back resting at home and surgery is back on for the 15th.

Thanks again for the support and prayer.

Momma will write more details later, she's taking the first nap shift (wouldn't you know it, Elijah waited to have his worst up-the-back poop ever during Mommy's snooze, a couple diapers, a few hundred wipes, a quick bath and a thrown out onesie later I think we have it under control...gross).

Whole milk comes from cows

We are watching The Wiggles right now, and have been watching some sort of annoying children's show since 5:00. Elijah did not sleep well at all last night. There is too much to look at and too many noises. Dan and I got maybe a few hours of sleep, all pieced together. We both had crazy weeks, him at home with a sick baby all week and me with a stressful week at work, so we are beyond exhausted.

So Elijah is baffling everyone. Since we got here last night, his sats have been all over the place. When we got here yesterday, they were running anywhere from 36-68% with oxygen. While he slept, with mostly no oxygen, he was running between 60-74%. This morning lying in our laps, he has been in the 40s without oxygen and in the 50s with oxygen. Now, sitting in the crib playing with toys and no oxygen, he's running 57-61%. I DON'T GET IT!

We have absolutely no idea what the doctors are going to say about this. It's a good sign that he was high (for him) and steady through the night!

And wow, he has been SO CLINGY with Daddy. Dan cannot even leave the room without him freaking out. Last night, after getting poked and xrayed and being quite upset, he was in my lap still whimpering a bit. Dan left the room and Elijah looked at me like WHERE IS HE GOING and then gave me a pouty lower lip and said, "BABA!" (Dada) and looked toward the door and started crying. It was so cute! His first call out to one of us! I am totally chopped liver right now, by the way. I'm trying not to take it too personally.

Ok, one funny story. The nurse we had when we first got here last night asked if we fed Elijah formula still. I said, "No, he drinks cow's milk now." She said, "Oh, we don't have that here! There's a grocery store down the street. Would they have it there?" Dan and I looked at each other, confused. We said, "Uh, yeah, I think they have whole milk at the grocery store." She was like, "Oh! We have whole milk here!" Hmmmmmm.

We'll update again when we get the full scoop. Thanks so much for the prayers, everyone. We appreciate it so much!

Exhausted

We are waiting for Elijah to fall asleep right now, he's tired but he keep playing with the cords in his crib.

Without oxygen he's satting at about 52%, we are trying to keep him up closer to 60% with oxygen but it hasn't been easy. He has been amazing (not in a good way) the Dr. and nurses by how low his oxygen has been dropping because he looks so good.

Dr. Wright wants to watch him through the night and then tomorrow he'll hopefully be able to talk to Dr. Moga and Dr. Gremmels and come up with a new plan. We were not liking the thought of Dr. Gremmels being out all week but it turns out he'll be back in town on Monday and back at the hospital on Tuesday.

That's about all we know right now, we're anticipating the surgery being moved up to this week. We'll be sure to update as we find out what's going on.

Thanks again for all your prayers and support.

Here We Go

Elijah has always been one to do things his way when he is ready and he's doing it again. His Sat's are low (59-60%) and that's too low for comfort. Dr. Wright, the on-call cardiologist, is calling to get a bed right now so Elijah can be watched closely and the surgery date can be moved up. With such low Sat's any minor problem between now and surgery is magnified. We don't know yet how soon the operation will be but we are headed to the hospital as soon as we get packed.

As you can imagine the suddeness of this is quite stressful and uncomfortable, especially with Dr. G out of town. Please pray for our little man and for God's grace and peace.

We will let you know when we get settled at the hospital and find out more details.

Thank you again for all your support.

Tension

I feel like we're an airport and we're on red alert. It is really tense around here. Elijah's cold is a little bit better today. He didn't throw up and his nose isn't as stuffy. He did still have a temp tonight and he's been very tired and lethargic. And something a little scary happened tonight. I gave him a bath because I hadn't given him one since Tuesday. He usually loves his baths, but on Tuesday he freaked out a bit. Ever since then I've been afraid to try it again. He was in the bath for a few minutes tonight, splashing around, blabbing away, and I noticed that he was turning PURPLE. Like, DARK purple, all over his whole body. I immediately took him out of the tub and dried him off, but he was still really discolored. He started acting funny. He was very lethargic and I was seconds from calling 911. I grabbed a blanket and wrapped it around him and snuggled him as tight as I could to keep him warm. I sat with him for a few minutes and then he was back to normal.

His body is struggling right now and he can't endure even the littlest variance from the norm (a bath). Tonight as I was feeding him, I noticed some unusual breathing and I spent the whole time anticipating a throw-up session and/or something worse. It was stressful! I put him to bed early and he has been very peacefully sleeping (I've checked 17 times). I'm pretty sure we'll be contacting the Heart Clinic sometime tomorrow. Elijah needs oxygen. We don't want to bring him to the hospital unnecessarily, but we are seeing very obvious signs of heart failure and we are getting worried. WHY ISN'T DR. GREMMELS IN TOWN? I do have his cell phone number. I'm very tempted to call it.

I apologize for the continuous downer entries I've been posting lately. Please stick with us. It will get better soon, I can feel it! Thanks for checking in. We love all of you!

The Porta Sickies

We are all sick here. Well Dan is only semi-sick. Elijah and I are nice and sick and feeling yucky. DayQuil has been saving me during the day. I'm SUPER busy at work right now. I'm basically trying to do four weeks worth of work in like seven days since I'm going to be gone for the last half of the month for Elijah's surgery. Fun! So that hasn't been helping my health, mentally or physically. And our Elijah is a sick sick boy. :( It makes me teary even thinking about it. He has a cold or the flu, we're not sure which. He keeps throwing up, but we're not sure if that is from the extra saliva (his tummy has always been sensitive to that) or if it's something more. He had his highest temp yet tonight, which I don't like at all.

His health is definitely declining. And I don't think the cold/flu is responsible for all of it. His heart is failing. At one point today, he was sitting next to me and he just put his hands down on my lap and collapsed on me. He has never done that before. He is conserving his energy as much as possible right now. When I lay him on his back on the floor, he won't even attempt to roll over. It is just too much for him. His heart is working really hard and he's exhausted.

As the mama, I just know that things are off. I worry that surgery is scheduled too far out, but he is sick, so at the same time it's not far out enough. I'm worried and scared and wondering how he is going to fare for the next 12 days before surgery.

I feel LOST without Dr. Gremmels in town. If it had been him who called me yesterday instead of Dr. Wright, I think I'd feel a thousand times better right now. Dr. G is just the best doctor on the planet and we don't like the feeling of not having him right here for us during our very stressful time.

Ok, we're going to sleep! Thanks for checking in on us. xoxoxoxo

Sick and crabby and satting low and puking

Dr. Wright called me back and said that as long as Elijah isn't breathing extra hard, eating a lot less and unless he stops producing wet diapers, then he isn't worried. He thinks the low sats are happening because of his sickness and because he has a bunch of gunk blocking his airways. If we see anything unusual (the symptoms mentioned above), we are to go to the hospital. Otherwise, we just wait and watch and do our best to get him better.

He is still so sick. He ate dinner and had his bedtime bottle and then threw it all up! He has a temp again tonight, but it's not too high. He has a lot of gunk in his nose when he breathes. He was exhausted at 5:30 tonight so we put him down a bit early. It's so hard seeing my baby so uncomfortable.

I'm confident that Dr. Gremmels would have given us the same advice, so I am trusting Dr. Wright. It just feels so weird knowing he is satting THAT low. Ug! It's amazing what this kid's body can handle. Oh and Dr. G won't be back in town till the day of Elijah's pre-op! What is he thinking, taking a vacation?! I'm totally kidding, if anyone in the world deserves a nice long vacation it is him.

Here's a cute video from today. Remember how I said that Elijah says "Baba" for everything? And his bye-bye wave is actually the sign for milk. Lately, he signs everything with the milk sign. Baba and milk take care of everything! Look at him just lounging in the LoveSac. He has no energy. He just stays wherever we put him. What a good (exhausted) baby.

Low

Dan took Elijah to the doctor today just to ease our minds about his sickness. Thankfully it is just a cold and his lungs sounded good and his ears were clear and we just have to let it run its course. Yay!

But. While he was there they checked his O2 sats and guess what they were at? 59-61%! That is crazy! We honestly cannot tell by looking at him that he is running that low. His lips look fine unless he's upset and then they get a little bit blue but that's been pretty normal for him for the past month or so. He hasn't been eating well these past two days, but we've attributed that to his sickness.

I called Dr. Gremmels in a panic but he is out of town. He can't go out of town! What is he thinking?! I'm kidding, but really, I feel totally lost without him! Dr. G's nurse sounded a bit concerned when I told her what Elijah's sats were at so Dr. Wright is going to call me shortly to set up a plan. It's possible that we may be going to the hospital tonight or tomorrow. I really have no idea. I do know that 60% sats are LOW.

We'll keep you all posted. Prayers, please!

p.s. DayQuil has helped me go from feeling like CRAP CRAP to just feeling like CRAP. At least it's helping a little! And I think Dan might be getting whatever Elijah and I have. We are a mess!!

I smell poop

This morning I changed the smelliest poopy diaper in the history of my life. I showered and got ready for work afterwards and now I'm sitting in a building 10 miles away from where that poopy diaper is and I STILL SMELL IT! I think the scent adhered itself to the inside of my nose.

Now that I've grossed everyone out...
Elijah is still a sick boy. I woke up sick this morning, too. Oh goody! And Dan has a sore throat like I did yesterday, so he may be on his way to sickness as well. Last night Elijah's temp was at 99.5 again but that's the highest it has gotten. He has a lot of snot and boogers and he sneezes like 173 times an hour. Oh and yesterday he threw up again after I fed him lunch. Poor baby, I hate seeing him feeling so yucky.

I'm so worried that surgery will have to be postponed. His little body cannot be compromised AT ALL going into the biggest surgery of his life. We will just trust that if it does have to be postponed, then that is what is meant to happen. The anticipation of all of this is making me crazy (and you should see all the grey hair I have now!) so I'm praying for quick healing for our chubster and for a surgery date of April 15th! If you wouldn't mind, maybe you could say a prayer along those lines, too? Thank you!

p.s. Elijah is going to love me some day when he reads about all of his bodily functions that I describe to the world in full detail! Sorry Elijah!

p.p.s. I wish I could share with everyone the three cute messages I got yesterday from mamas who were checking in on my mental well-being. First was Samantha, who has a cute little Texas drawl. Then there was Kathy, who has even more of a southern accent. Then there was Deb who has the world's cutest British accent. It was a day of cute accents! I want one!

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?

Blah

I feel extra glum today. Maybe part of the reason for it is this...


Yes! More winter!

Or maybe it's because Elijah is in fact sick again. Poor kid, he has a snotty, clogged nose and he has a temp and he keeps sneezing and you can tell that he just doesn't feel well. We have been trying so hard to keep him away from germs. I guess now we will have to be in full quarantine mode because I certainly don't want to postpone surgery. Please pray for quick healing for our boy! And for sanity for us, as we will be confined to our house for the next 15 days.

As I wrote yesterday, I have been feeling pretty sad and weak lately. Something Dan and I try to do every week is take turns picking a Bible verse that we feel is appropriate for the week and talk about it. Well this week it is my turn, so I think these are the perfect verses for me (us) to ponder:

2 Corinthians 12:10
"Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong."

Isaiah 40:31
"But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint."

On another note, our insurance company decided that Elijah doesn't need his RSV shot this month, which is completely ridiculous, so we are doing what we can to get that approved. We have not been a huge fan of Health Partners since we switched over this year. What? You want to keep your baby from getting RSV before he has open heart surgery? DENIED! That makes total sense.

One cute thing to share, since this post is filled with blah-ness. Elijah still has not said the D sound. Every day, I say to him, "Elijah, say 'Dada,'" and lately he will pause, look at me, and say, "Baba!" Then I'll say, "Ok, now say 'Mama,'" and even though he DOES know how to say the M sound, he will pause, look at me, and say, "Baba!"

45 degrees is WARM

This was the view out our window last Sunday...



This is what we did today...













Elijah loved the swing! This was his first time to try it out and he was in heaven. The high today was 45 degrees, and that was amazingly warm for us. Finally we get a glimpse of spring! AAAAaaaaaahhhhh, I can't wait for warmer weather. This winter has been particularly harsh and LONG and we are very ready for a change of seasons here in arctic Minnesota.

Let's see, what has been going on with us...well, Dan has been trying out some new styles...



and Elijah has been getting very tired, very early in the evening. He never falls asleep in my arms like this.



And Elijah's toy box has been throwing up toys..



Oh and Elijah has been throwing up, too. We have no idea why. Maybe new teeth? Maybe a sickness? We don't know. He had a 99.5-degree temperature this morning, but aside from this and a few small throw-up sessions, we see nothing unusual. I guess we will keep an eye on things and see what happens. We are PRAYING for no sickness before surgery. We need our man to stay healthy!

I've admittedly been pretty sad lately. I've been crying a lot at night because that's when I think about surgery and what is to come in the next few weeks. I spend every possible moment with my chunky monkey and I've been loving on him and smooching his chubby neck as much as possible. I'm just really anxious about surgery this time around. I don't feel the same strength I felt the last time. I'm praying that will change.

Thanks for checking in on us. I have some cute Elijah stories to share but I'll save them for another post. Thanks for all of the prayers. We love all of our friends and family so much! xoxoxoxoxoxoxo

Yummmmmmm

Our silly boy

The Moga Smile

Dan and I are reading a book about pediatric heart surgeons and guess who is in the book?? Elijah's very own surgeon, Dr. Moga! We already knew he was smart and nice, but this book confirms what an amazing surgeon he is and what a kind, compassionate person he is on top of that. In the book, the author refers to The Moga Smile, and if you've ever met Dr. Moga you know exactly what that means. I guess we've got Moga on the brain since we'll be seeing him in LESS THAN THREE WEEKS. AAGHGHGghhhh, that is way too soon.

No Easter this year

I didn't write an Easter update because Elijah and I stayed home and didn't do much. We decided that we want to keep him away from little kid germs until after his surgery just to be on the safe side. So Dan went to church and went to his parents' house for dinner without us, but at least we were able to enjoy (and still are enjoying) some yummy leftovers! A very good friend of mine from Phoenix, Laurie, came into town for a last-minute business trip, so she was able to spend some time with us last weekend. I haven't seen her since our wedding two years ago! And this was the first time she has met Elijah. I think you should move to MN, Laurie! I miss you so much! I know how much you love the weather here.

Elijah has been good. He has gotten over his cold, thankfully. Let's hope it stays that way. He has been a feisty guy these past few days. He's going through some sort of developmental growth spurt right now. He's suddenly being a bit choosy about what food he eats (if you know me, you know how much picky eaters BUG ME, so let's hope it's just a phase) and he just has an all-around feistiness about him that he's never had before. He has been making this scrunchy face that cracks us up. He usually does it when we're feeding him. I have it on video and will TRY to find time to upload that in the next few days.

I have another crazy busy week at work so this week is already insane. I think it's meant to be this way so we don't have to think too much about surgery?!

13 months old (yesterday)!

Click on images to enlarge.

Tax day it shall be

We have a surgery date set! April 15th! Having this date is terrifying, yet somehow it's relieving. That gives us 3.5 weeks to emotionally prepare. I will be spending every possible waking, non-working second with my chubster. In fact, I think I'll run home to squeeze him right now.

I must admit, we're a bit bummed because of this situation, but really, what does that matter? Nothing! Elijah is all that matters and April 15th is his day to be a star, and that's that!

Here we go with the countdown. Yikes!

p.s. He's doing much better today! His gunk magically got TONS better overnight and he woke up his happy, cheery self. He's home with Daddy today, getting lots of rest and food. What a strong boy. I'm so proud of him.

We are home

We just got home and settled in. We spent Elijah's last 6 hours in the hospital taking turns holding him in the rocking chair (because that was the only way he was mildly happy). He was a pretty crabby boy and he was VERY congested. I think last week's cold compounded with the breathing tube down his throat for a few hours all made a bunch of gunk settle in his little chest. I've never heard him so gunky before! He gulped down a bunch of apple juice and even some milk in the hospital. Oh, and about a million graham crackers. His sats stayed right around 70% and he didn't throw up once, so they sent us home! Yay!

Tomorrow we will get an official surgery date that will probably be between two and three weeks from now. SCARY! Can you believe it? I can't believe it! It has all happened so fast! But what do we expect with our man, right? He does EVERYTHING sooner than expected because he's so awesome!

Elijah really was such a brave, strong boy today. What a little champ. He endured the poking and prodding very well and I'm very proud of him.

We got him home from the hospital and put him straight to bed. He was totally beat. He sounds SO GUNKY as he breathes, even when he's sound asleep. I hate it. It makes me nervous. I've never heard this level of gunkiness before! I don't think I'll be sleeping much tonight. Oh I can't wait to go to work in the morning!

Ok, here are some pics from the day. I have so much more love and respect for our amazing man after today. The things he goes through! He is incredible!


Bubbles! The savior of the morning, pre-cath. I am totally going to Target and buying bucketloads of bubbles.


There's a story here. (I had something else written here about this picture but Dan deleted it and threatened bad things if I rewrote it! How rude!) While we were in recovery today, Elijah HAD to be holding onto something at all times with his left hand (the only arm not occupied with IVs and wires). First it was the collar of my coat.


Then it was a cracker. If the cracker fell from his hand, he TOTALLY FREAKED OUT.


Then it was my cell phone. If the cell phone left his hand, he TOTALLY TOTALLY FREAKED OUT. It must have been a comfort thing? (Notice his red face in this pic. It was a delayed side effect from one of the medications he received while in the cath lab.)


Ok Daddy, my milk is way better than any of those things!

The scoop

Based on everything seen today and Elijah's quickly dropping O2 sats, surgery is near! Like, TWO WEEKS near. We'll set an official date tomorrow. TWO WEEKS?!?!? Someone give me drugs! We're actually very much looking forward to getting past the surgery, but obviously the surgery itself we are dreading a bit.

Hopefully we'll get to see our man in just a bit here. And we're still optimistic about going home tonight. Thanks for checking in!

(If you haven't already, scroll down to see some cute pics. And for more, click on the Photos tab at the top of the page.)

Done

We just got another call, the boy is doing good and they are done with the procedure. The nurse said they put 2 more coils in his arteries to stop some duplicate blood flow (the same area they coiled at his last cath) and ballooned another narrow artery. They'll do another echo (if they can find someone quick) while he's under and then they'll wake him up. Hopefully Elijah will come out of anesthesia without any issues and eat well so we can go home!

ps. Megan is a hottie, Arrrroooooooooooooooo!

Still waiting (and some pics!)

We got a phone call from the OR at about 10:40 and they had just gotten the catheter inserted into the vein (probably took so long because of the chub on those legs!). Everything up to that point was going fine and Elijah was resting under anesthesia comfortably. Hopefully we'll get more info soon.

In the meantime, here is a teaser for Elijah's 1-year photos. They turned out sooo cute! I'll get the rest of them uploaded to our Shutterfly account soon.

To make the slides move faster, click on the + button on the bottom left corner.

Heading in

They just took our little man back to the cath lab. Dr. Gremmels said the procedure could take anywhere from 2-5 hours, depending on what they will need to do while they are inside, or if they will just be taking pictures. We're hoping for two hours!

They had to take blood and miraculously, they found a vein on the FIRST TRY, but he still didn't like it too much. I can't blame him.

So now we wait! We will update as soon as we hear any news.

Cath tomorrow

Elijah passed his pre-op physical today, so we are heading to Children's early in the morning for his heart cath with the wonderful Dr. Gremmels. One thing that surprised me at today's visit? His sats are now at 69-71%! What? So fast? Just last week they were at 73%! I guess we'll find out more details about what's going on tomorrow. Please say some prayers for our little man. He has been sooo clingy lately and I'm worried that he's going to have a stranger breakdown in the hospital. Also, we want good results from the cath and to come home tomorrow night!

Thanks for checking in! We'll keep you posted tomorrow.

Busy weekend

We had a busy weekend! Saturday I took my boys to a Tastefully Simple party (because I can't stand to part with them on the weekends). Luckily, Dan is good friends with the host's boyfriend, so the boys bonded in the kitchen while the girls sampled food and spent money in the living room. Saturday evening we headed to our good friends Ronda and Andrew's house for the night. We celebrated St. Patty's Day! Elijah even got to wear the famous green Porta hat. We had a really good time. This morning we drove home from The Picks' house and for the first time in a long time, headed to church! After church the three of us went out for a spontaneous lunch at the Green Mill. We went home for a long family nap and then went to the Mall of America to meet the awesome Eric, Ellen and Leo, some good skydiving friends of ours. Leo was so cute, sharing his crackers with Elijah. Now Elijah is sleeping and Dan and I are having some down time before bed. We have a big week ahead, with his heart cath on Wednesday. I'm totally dreading it because of the SEVERE separation anxiety E has been displaying lately. I guess we'll see how it goes. Thanks for checking in on us. We appreciate your love and prayers!!


Elijah checking out Ronda and Andrew's cool stained glass elephant lamp


Mommy, what is on my head? (Ellen, do you recognize my shirt??)


Jess taking on the persona of Elvis


Green beer!


Cute Ronda and Andrew pic(k)


Elijah playing with his new toys from Auntie Carolyn and family. He loooooves the drum and tambourine!

Proper banana storage

Elijah is still sick, but I believe he may be on the upswing. Dan stayed home with him Monday through Wednesday of this week in an attempt to get him healthy as quickly as possible. As some of you out there may know, staying home with a baby by yourself for multiple days in a row is no easy task, emotionally and otherwise. It gets really draining (no offense, Elijah, you're so totally worth it!), especially when that baby is sick. A few nights ago I opened the silverware drawer to get a spoon, only to find a half of a banana mingled in with the steak knives. I showed Dan my finding and he looked at me glassy-eyed and said, "What?! I was trying to increase the life span of the banana!" I've been teasing him about it all week. Elijah, ease up on the poor daddy, you're making him weary. :)

Right now our poor boy has the reddest butt I've ever seen. Last night when I put him in the bath he screamed bloody murder. The water must have stung his poor bum to pieces. We got some magic cream from the doctor so hopefully that will work quickly!

Have I mentioned the recent increase in clinginess? He is one clingy kid these days. I don't know if it's because he's sick or because it's just that age or both, but he needs one or both of us touching him if anyone else is within twenty feet of us. His one year photo session was quite a challenge last weekend and Dan said he had a complete meltdown at the doctor's office yesterday. Just when we have some hospital time ahead! Ahhhhh yes, it should be interesting.

Assuming he keeps getting better, we're still on for the cath next Wednesday. Please keep our sweet chunky man in your prayers. We want a healthy boy on Wednesday and good results from the cath! Thanks for checking in on us!

AHA

I've gotten a few emails from people about something that I'd like to bring up here. This year we are walking in, and raising money for, the American Heart Association Heart Walk that is taking place here in Mpls. Some people have expressed that we should NOT be supporting the AHA because they don't put all of their money toward children's research.

Yes, a small percentage does go toward children, but a "small percentage" for the AHA isn't peanuts. Yes, I realize that there are other organizations who put ALL of their money towards children's research (I love Children's Heart Foundation and we do donate $$ to them!) and yes, I realize that the AHA has a lot more ground to cover when spreading out their resources.

Not only are we doing this walk in honor of Elijah, but also in honor of Dan's dad, who also has heart disease and who has dealt with a lot in his life because of it (and he's not overweight and he's not a smoker). Dan's grandpa died at 42 from a heart attack (not overweight and not a smoker) and no one ever knew he had heart disease! Sooo.....I'm sorry if our involvement in the Heart Walk has offended those of you who "hate" the AHA, but unfortunately, as Portas, this organization is and will be an important part of our lives forever.

Besides, it's fun to gather friends and family and walk in honor of the people who are beating the disease!

I apologize for the hostile post, but really?! I was a little shocked to get ripped apart for trying to do a good thing and support a good cause. It's amazing that people would try to make me feel bad about that.

With that all said, please help us out, if you feel so inclined! We're excited to see all of you who can make it on April 26th. We're trying to come up with fun t-shirt ideas. If you have a good idea, please share!

Ways to tell when Elijah is sick

- He wakes up in the morning with dried snot all over his face.

- We have to get up in the middle of the night to suction boogs and give him a nebulizer treatment because he sounds like darth vader when he breathes.

- He won't eat. Not even cottage cheese!

- He freaks out if Mama walks more than two feet away from him.

- He cries when I give him a bath.


I'm just hoping it's not too bad of a sickness. His heart cath is a week from tomorrow and we need him to be healthy for that. He's at home with Daddy today, so hopefully he can get lots of rest and start feeling better. Aside from that, not much is going on with us. We're anxious to get this cath out of the way so we can have a better idea of what lies in store and when. Somehow, for me, it's easier having a date and plan in mind, rather than having a floating, approximate date that could span anywhere over two months.

Two of my heart babies, Emma and Grace, are having big surgeries this week, so please keep them in your prayers.

Maybe, maybe not

This week has been pretty boring. Boring is good around here. I'm finally getting over this yucky cold. Just in time for the weekend, yay! Elijah has had a low-key week. He got his RSV shot on Wednesday and didn't like that too much. It seems like they should get easier every time, but instead they get more difficult for him. He was 23 lbs. when the nurse weighed him. Chunky boy!

I think Elijah is still catching up on sleep from our trip. We've been putting him to bed at 6:00 every night this week and he is still tired during the day. It's so crazy how this sleep thing works. If he falls asleep a minute after 6:15p, he wakes up very early (between 4:30 and 5:15ish) in the morning. But if he is sleeping before 6:15p, he sleeps soundly until 6:00a. This seems so counterintuitive, but the earlier to bed, the longer the sleep. When he is in catch-up mode like he is now, we shoot for 6:00p as a bedtime until he seems to be somewhat caught up.

I have been hesitant to mention this topic because I haven't wanted to jinx anything, but I don't really believe in jinxing, so.... The awesome company that I work for sends its employees (and spouses) to an off-site sales meeting once a year. In the past I've been fortunate enough to go to places like San Diego, Jamaica and Scottsdale for these meetings. Last year we missed the Grand Cayman meetings because it fell right in the middle of some serious Elijah stuff, so we have been joking that Elijah is going to make sure we don't go to this year's destination, either. Oh, you're wondering where that might be? Ohhh just boring old Maui. Back when we booked the tickets (yes, the tickets are booked!), we were confident that Elijah's surgery would happen much later and that it wouldn't interfere with the Maui dates. Well, now we're not so sure. The sales meeting runs from April 30th to May 4th (we're booked to stay till the 6th), and from the way things are falling into place, it seems like his surgery might be right around that time.

We were originally planning on bringing Elijah with us (and my sister Lissa to watch him while we went to mandatory events), but now it looks like if we are able to go, we would probably just leave him behind. Lissa, do you want a baby at your house for a few days? :) I really don't like being away from him for that long, and I'll probably cry for the first two days (the last time we left him for an extended time, last August when we went to Vegas, I was a complete crazy, nutty wreck for the first 24 hours), but we can't justify risking his health in any way being so close to OHS.

In the grand scope of things, going to Maui doesn't really matter. We're obviously much more concerned about our son and his health and recovery. That is the bottom line. But, wouldn't a trip to Maui be nice? We've had a very long, stressful year, and a long, cold winter (that is not over) so this would just be nice. If it's not in the plan, then that's fine. If it is, YAY MAUI!

p.s. If we went, we'd be staying at this dump.

What is unusual about this photo?

Click here to see the original. Tell me what I did to the photo!

Yes, I switched the eyes (and eyebrows). Elijah has my eyes and I have his!

We're home, Mama is sick and Elijah is not

I was worried about Elijah getting sick on vacation but it was ME who ended up getting sick! I woke up Sunday morning not feeling the greatest, but our frenzied day of travels made me mostly forget about it. It is HARD WORK traveling with a one year old. We had quite an eventful day on Sunday. We made our connecting flight in Cleveland (Elijah says, "Yay Indians! Don't tell my daddy I said that, Grandpa!") by a minute and lugged our luggage and a baby around with us and did everything in our power to keep him happy for seven straight hours. It was a tiring day, to say the least. This morning I woke up feeling like poo. I even stayed home from work and slept most of the day. I still don't feel wonderful, but I am feeling better.

I did manage to sit in on Elijah's session with his OT this afternoon. I'm glad I was there because the OT had nothing but reassuring things to say about his progress. When we told her that his O2 sats were running between 72-74%, she said, "WELL! It's no wonder the kid doesn't want to move anywhere. He doesn't have the energy!" She said his cognitive, social and speech skills are super and that, aside from gross motor, he is right where he should be. Moving around a lot is TOO MUCH for him right now. It's out of the question, actually. 70ish% sats are very low! It is very hard to function on that amount of oxygen running through your blood. He is conserving his energy, understandably. We have known this, but it was good to hear it from a professional. We're not going to push him to accomplish gross motor milestones until after he has had a chance to recover from surgery.

Elijah was a good boy on our trip. We do think he is getting his molars, although we don't know for sure because every time we try to look in his mouth he freaks out. He threw up once more on Saturday but hasn't thrown up since and has otherwise been just fine. We're not sure why, but he woke up EARLY every morning we were in Miami. I mean, early! A couple mornings he was up at 4:30! Needless to say, Dan and I (and Elijah) came home extremely sleep-deprived. Maybe that played a part in me getting sick, who knows.

We love to travel, so it is always hard coming home. It is good to be home, though. Ooohhhhh, we miss the beach! We're already planning where our next journey might be.

Some of our last pics taken in Miami:


Precious face









This is the only picture we got of him with his butt on the sand. He didn't like it. Can you see the little black eye? He fell on a hard toy in the hotel room and it poked him right in the face.








Hammock time with Daddy.