Energized

Elijah has been doing very well these past few days. He has so much more energy than we have ever seen before. He used to get tired and cranky very quickly but now he is getting by on very little daytime sleep (UG for us!) and he hardly gets crabby at all. Once his incision and chest heal a bit more, I bet he will start trying to move around. You can see that he wants to, he just doesn't know how yet. The rash on his legs did turn out to be a yeast infection, and we got it under control in no time with our magic yeast infection cream.

I am working from home this week since everyone in the office is in MAUI (boohoo, we would have been at the airport right at this very moment to go there, so I'm shedding a tear for that) and since Elijah is still having some anxiety issues. Next weekend Dan and I are planning to head down to Florida for one night for our friends' wedding and I am a little stressed thinking about leaving Elijah. I know he will be in good hands with my sister and her family, but I just worry because I'm the mommy and that's what I do. We haven't booked the tickets yet and I keep telling Dan that we should get that done before I change my mind!

That's about all for now. Elijah gets his last RSV shot today (finally) so I'm sure he's going to love that. It will be good to have him covered through May.

Spunk

Since Grant spent so much time and effort helping us out with the Heart Walk t-shirts, I wanted to show you all pictures of his design! The images are a bit fuzzy because I couldn't get my zoom to work in this lighting (I don't like our camera AT ALL).


Front design (small in upper right)


Back design (big)

Aren't they awesome? Now PLEASE, we don't want Grant's hard work to go to waste, so tell me if you want one. I don't have any smalls, but have mediums, larges, a couple extra larges and one size 4T. I am just going to start randomly sending them to everyone I know soon.

The other thing I wanted to write about is Elijah's newfound spunk! It is so wonderful to see him already blossoming and doing things that he couldn't or didn't want to do before surgery. He has never been able to hold his own bottle but suddenly now he can. He never used to say "Mama" discriminately but he is finally starting to. I love it! Tonight when we were done reading books before bed, I said the same thing I say every night: "All done with story time. Time to go to sleep." He did the sign for "all done" and then let out a big whiny, "Mama!" So cute! He is overall much happier and his personality is so spunky and cute. He just seems to understand more and express himself better. It is an amazing change and I'm sure it will just continue to get even better. He hasn't shown much of a desire to move around yet, but we'll give him some time for that. The one thing he has regressed on is his napping. He will not nap! He's reverting back to a year ago when he would nap for 20 minutes and then be wide awake. That was one of the longest, most stressful 3-month periods I've ever been through. Let's hope he re-learns how to nap very soon. At least he is sleeping well through the night. Thank God for that.

Before surgery, he never would have had the energy to do this (It's kind of long because I couldn't decide what to cut out....it was all too cute! The last part of the video is the cutest, so watch it all.):

Good check-up

We just saw Dr. Gremmels and our little (well, not so little, really) Elijah is looking great. Dr. G was thoroughly impressed and we don't have to see him again for a whole month! His incision looks good, his lungs sound good and based on the very quick echo (ultrasound of the heart) that was done, there is no fluid around his heart and his heart function looks perfect. He has even gained a pound in less than a week. He's just shy of 24 lbs (he had lost one pound during surgery/recovery)! We are going to start weaning him off of his Lasix AND his nebulizer treatments and hopefully he will tolerate those things well.

He wasn't even too traumatized during the appointment. During the blood pressure check and the echo he cried and had a terrified look on his face, but otherwise all was well. Dr. G even commented on his happiness and his ability to have such a good disposition despite everything he has been through recently (he doesn't see him at home when he won't let us out of his sight and when he won't nap because he wants Mommy and Daddy).

There is a giant, quickly spreading rash on both of Elijah's legs that we first noticed this morning. Dr. G thought it might be a yeast infection associated with some of the drugs that were in his system. Dan is bringing him into the ped's office today to get it looked at and hopefully get something on it so it stops spreading. It looks pretty bad. I'm hoping it has nothing to do with the nasty rash Dan got in the hospital that has taken over his entire forearm.

No walk

Lounging instead of walking. We should have called it the Heart Lounge 2008!


Missy, Dennis and Alex (and baby in belly) drove up all the way from Iowa to be with us yesterday for the walk. Thank you guys so much! You're such wonderful friends.


Getting ready to go to Grandma's house for a visit

Because of the crazy weather yesterday (WHAT MONTH IS THIS?!) we did not participate in the walk. Instead, we had people over to our house for yummy pizza! It worked out well because everyone got a chance to see Elijah in a warm environment. I was bummed about not doing the walk, but at least we managed to raise a lot of money for a good cause. We have some Medium and Large t-shirts left and they look AWESOME! Grant did an amazing job and worked hard on them. If you would like one, let me know and I can get it in the mail to you!

Elijah has been sleeping great at night, but he hasn't been napping well. After about 30 minutes into the nap, I think he realizes that Mommy and Daddy aren't around because I can hear him screaming, "MAMAmamama BABAbababa." Stupid hospital!

Otherwise, he's doing very well! You'd never know in a million years that he had major surgery less than two weeks ago. He's our amazing kid.

Last night my sister came over and watched Elijah while we went out for some much-needed adult time. It was sooo nice! Thank you, Lissa!

We're all going to try to take a nap right now. Tomorrow I'm heading back to work (booooo!) and we also have an appointment with Dr. Gremmels at 10:00. Thanks for checking in and thanks so much to everyone who helped out with the non-Walk and who came over to spend some time with Elijah. It meant so much to us!

Only in MINNESOTA!

I cannot believe this. It's is SNOWING and it's freezing cold out today. The status of the walk is "tentative" and I don't think it's a great idea to drive to St. Paul only to be told to drive back home. So Dan and I are thinking that instead of doing the walk, maybe we'll just have everyone over to our house at noon for pizza? We have people in from out of town for this event, so this completely stinks. I feel so bad.

For those of you who were planning on attending, let me know your thoughts. If you all think it would be worth it to meet at Harriet Island still, then we'd be willing to do that. I just don't know what to do! ARG!

The wind chill right now is 21 degrees. Yuck. 28 mph winds with snow.

Heart Walk!

I want to write out some information about the Heart Walk tomorrow. For more detailed info, you can follow this link. The walk begins at 10:00 am, but try to be there a little bit early. A survivor photo is being taken at 9:30, so Dan, Elijah and I will be there by then. It looks the weather is going to be crappy, so I'm not sure if we'll keep Elijah there for the whole thing, so if you want to see him and give him a smooch, come early! Wear a red shirt because I'm not sure we're going to have enough Elijah t-shirts for everyone (sorry! that's my fault for waiting so long.). THANK YOU Pam and Grant for taking care of the t-shirts for us. This means SO MUCH, you have no idea!

So far, Team Elijah has raised over $1,600!!!!! That is awesome! I'm going to ask that ALL of that goes toward CHD research. All of our team captains, you did a wonderful job! Our team captain who raised the most money was Debbie Schnieder, our cute British skydiver friend who we love dearly and who is the cutest, sweetest girl I know. :)

I haven't had my heart in this walk for the past few weeks because of worry/stress/hospital time, so I feel like I have dropped the ball and not kept everyone as informed as I should have and not thanked everyone enough for all of their help and effort. I'm sorry for that, and THANK YOU! We are so excited to celebrate our baby's life in this way and all of the support is overwhelming and so much appreciated. Elijah is a loved little miracle man. If you have any questions about the walk, please feel free to call me: 952-484-4921. We hope to see lots of people there!

In other news, I ended up not going into work today (arg, another vacation day lost!) because it just feels too soon. Elijah is afraid of everything and is still pretty emotionally beat up from his hospital stay. We cannot walk a foot away from him without screams. Every time I put him into bed, he screams horribly and that tells me he's very afraid. It is really tough caring for a LARGE baby who isn't mobile and who we have to "scoop" like a tiny infant and who won't let us leave for a second because he's scared. It's a lot of work! It's worth it, though. I really can't complain. We have our baby and he is doing so well!

I made Dan leave the house tonight and go hang out with a friend. I'm going to sit my butt in the LoveSac and veg out. We are looking forward to seeing a lot of you tomorrow!

And one last thing. PLEASE check out this post and consider contributing books to Kate's Kart. This is such a wonderful organization that my heart mama friend has started. I'm so proud of her! Let's send her LOTS and lots of books!

Videos

If you haven't already, please see the previous post about Kate's Kart!


That's our boy! He is sooo content. He could lounge all day like this and be totally happy. Even with a fixed heart! Ug, I think we have a lot of work in store.

I've been meaning to write and say that we are ALL going to try to make it to the Heart Walk on Saturday. All three of us! That is, if the weather is cooperative. Our awesome friends Pam and Grant volunteered their talents and time to make some t-shirts for us. I don't think we'll have enough for everyone, so plan on wearing a red shirt just in case. I'll post further details about the walk tomorrow sometime.

I called Dr. G today because Elijah's eyes were looking a bit puffy again before bed. He said to increase the Lasix to 3X/day for a couple days and that should take care of things. He hasn't slept very well today (he's soooo scared when we leave him in his bedroom by himself) so hopefully he will get a good night of sleep tonight.

And here are a few videos from recovery. The first one is a bit hard to watch (emotions came flooding back as I watched it).

Kate's Kart

Please check out Kate's Kart when you get a chance! Baby Kate passed away a few months ago due to heart failure. Her parents have started an organization to provide hospitalized kids with free books! Send them lots of books to fill the cart up with!! This is such an awesome thing that they're starting in honor of their little girl.

Make an on-line slide show at www.OneTrueMedia.com

Traumatized

Elijah slept like a champ last night. We put him down at his usual 6:00 bedtime and he slept peacefully until 6:00 this morning. He woke up with ONE puffy eye. WHAT?!?!?!? We're giving him his lasix so hopefully that takes care of things if he is retaining a bit of fluid. Our biggest struggles right now are the lugging around of the giant baby without lifting him under the arms and then there's the traumatized emotional status of our boy. If I even carry him into another room, he looks at me like, WHERE ARE YOU TAKING ME? ARE THERE BAD PEOPLE HERE? He has been completely traumatized by this whole experience and I think it may take a while for him to get over his hospital fears. If I walk two steps away from him, he gets worried and starts to cry. Poor baby! I feel so bad for him! He is so filthy dirty right now but I'm afraid to give him a sponge bath because I think it will be too much for him and he may have a meltdown. I'd rather have a dirty boy than a scared boy.

It is so wonderful to be home and to be able to let Elijah get quality sleep. I kept having dreams last night that our bed was a giant hospital crib and that no one would lower the sides for me to get out. Yuck! The hospital does such damage (emotionally) and at the same time so much good (physically). We're so thankful for the physical change in our baby, but so sad about the emotional damage it has done. The good outweighs the bad, though. Our baby's heart is fixed!! I stare at his pink lips and tongue and cannot believe it! He must feel like a million bucks.

Ok, please pray for NO FLUID RETENTION. That one puffy eye better behave. Thanks for checking in on us.

p.s. Dan and I did a number on our many snacks last night. I think I gained 7 pounds over night!

HOME!

This picture says it all!

I have never seen more smiles out of our baby than in the last hour since being home. He is a very happy boy. And we're happy, too! I felt the most amazing, freeing feeling as we drove out of the hospital parking ramp in the NICE WARM WEATHER.


Right before being discharged. This was Elijah's favorite position...just relaxing! Look at those thighs!


All of the stuff in this pic was given to us since we were admitted to the hospital. WE FEEL SO LOVED. This isn't even everything. There are a million balloons you can't see and there are many meals that are in our bellies. Dan and I were just talking about how we have no idea how people go through something like this without support. We have the best family and friends on the entire planet. (It's a good thing most of the food in the pic is non-perishable. We are set for snacks for a loooong time!) Thank you to all of you who have helped us out in some way. Even people across the country helped by sending gift cards for food and cash and care packages and gifts and all kinds of things. THANK YOU thank you thank you!


Happily playing with toys AT HOME!

We have an appointment on Monday with Dr. Gremmels for a check-up. Other than that, we're going to try to get back into the swing of things. The tough part this time around is that not picking Elijah up for 4-6 weeks underneath the armpits is DIFFICULT. Try getting a 24-pound baby in and out of a car seat, crib or high chair without putting your hands under his arms. I'm going to drop him!

I think I'm going to head back to work on Friday, as hard as that will be, so I can have some vacation time to use the rest of the year. I think I'll have five days to use until December 31st! I'll have to use it wisely!

That's all for now. We're going to put Elijah down for a nap in his own comfy, quiet bed where there are no nurses poking and prodding him at all hours of the day and night. Thanks for checking in and for all of the prayers and support. We love you all so much!!!! xoxoxoxoxoxoxo

Amazing boy

Elijah and the famous and wonderful Dr. Moga! I guess it's a good sign (according to his superstition) that he was willing to get his picture taken finally. Right before this was taken, he pulled out E's pacer wires and Elijah was a mad baby. We tried to let him calm down a bit before taking the pic, but nothing was working so we decided to take it anyway. It's amazing how emotional Dan and I get about Dr. M. He fixed our baby! (Dan is making me write the following: "Emotional" does not mean that he cried. He has to feel manly.)


No more wires!


Sitting up like a big boy

Elijah is doing great. He is officially wireless! YAY! He's been eating like a maniac all day and he even started sitting up for us a little bit. He got very angry with the nurses who removed his neck line and it took him a while to calm down after that. Right now we're watching (take a guess!) yes, Veggie Tales, and then we're going to try to get him out of the room and cruise around the floor a bit.

Strangely, his oxygen sats keep getting better?! Hmmmmmm, weird, but we'll take it! He's now running in the high 90s! He has pink cheeks and pink lips and he looks just wonderful. It feels so good to have a "fixed" baby. The weeks leading up to surgery had me in a heap of emotional turmoil and just about broke me. I couldn't even give my baby a bath in fear that he'd turn blue and stop breathing. He was so sick and it was terrifying to care for a baby with such failing health. It feels so good to have this almost behind us. You have no idea. Getting teary now just thinking about it. Really? We could be leaving here tomorrow???

If Elijah's xray looks good in the morning, they're going to send us home! I'm completely overwhelmed with about every emotion imaginable right now.

All of your prayers have gotten us to this point. Elijah had about a million prayers sent his way over the past few weeks and I have no doubt that they have helped him immensely. THANK YOU SO MUCH.

Nothing but good news!

Our kid is a rock star! Dr. G thinks we will be on our way home tomorrow! I really can't believe it. Eight days after a big big surgery and we may be going home?!?!? What an amazing kid.

He is getting his last dose of IV lasix and then his neck lines will come out. We've had so many issues with those silly neck lines, so I'm very excited about this step. And guess what else? Elijah tore his nasal cannula off early this morning and we just kept it off since he was satting between 92-96% ALL ON HIS OWN! We were expecting his O2 levels to be lower than this when we went home, so this is a nice surprise.

Once we get the nasty neck lines out I'm going to try to put Elijah in a wagon and take him for a ride around the 3rd floor. Dr. G said to push him a bit with the sitting and moving into different positions, so we'll see how he tolerates it. He's just loving being so content and immobile right now. That's our Elijah!

I'll post pics later of our almost wire-free boy.

Sleeplessness

Elijah slept hardly at all today. Ug! He's going to kill his parents! We can't wait to get home to get this boy some quality sleep. He is so stimulated by the lights and sounds of the hospital that it is nearly impossible for him to get rest. FINALLY at 5:00 tonight Elijah and I got enough of a nap to survive the rest of the evening. He just fell asleep for the night, after crying for quite a while, so Dan and I are relaxing for a bit before going to sleep ourselves.

His neck IV will hopefully come out in the morning and currently he is at room air and satting at 90-94%! That's awesome! He really is doing amazing. Today we have been trying to sit him up a bit but he SCREAMS. I think it must hurt. His neck/head control is poor and his sitting skills are even poorer. That's ok, though. You know why? He's ALIVE! He's here and his surgery was an amazing success and I don't care if he doesn't walk until he's 5. HE'S HERE WITH US! He's an amazing kid and he is going to do amazing things in his lifetime, I can feel it.

Dr. Moga stopped in briefly tonight because we were worried when we saw Elijah chewing on his pacemaker wires earlier today. He had ripped through the tape and dressing with his fingernails and pulled the wires out and had them all laid out on his chest! Dr. M had a laid back attitude and said (for the third time), "Aaaahhh, that's ok, I'll take those out tomorrow." It was really cute seeing him interact with Elijah tonight. You can tell that he really takes pride in his "work" and he kept stroking Elijah's hair and smiling and grabbing his fingers. It must be amazing to physically "fix" someone and then see them thriving and well. Dan and I can just tell that THIS is his fulfillment in life and that he takes so much pride in what God has put him here to do. The sparkle we see in his eye when he looks at Healthy Elijah is indescribable.

p.s. I was approached by the Patient Care Manager today regarding my recent nursing concerns. I told her that we were very disappointed in our care this time around and told her specifics about what had happened and she agreed that it was ridiculous what has happened. She assured me that we would not have sub-par care from now on. Tonight our nurse is wonderful and I'm pretty sure the best nurse on the floor was assigned to us because of my complaints.

Comfy boy

I think Elijah is loving this hospital time. He sure hasn't shown signs of wanting to move out of this lounging position. We tried to sit him up today for the first time and he forgot how to use his head muscles! He did NOT want to sit up. It's much more comfy lying down and letting everyone do things for him!

We got some good news today. The fluid around Elijah's right lung is GONE. Completely gone! Today we are weaning him off of his oxygen a bit more (they think he'll settle around 90% sats for a while and over time that will increase to about 95%). Tomorrow morning he gets his neck IV out, THANK GOD. After all of that is done, and assuming nothing else pops up, I think we may get to go home shortly afterwards (maybe in 2-3 days??). What a tough guy. I'm so so so proud of him. His strength is amazing to me.

I can smell my feet right now, so I better go take a shower. Gross. Thanks for checking in and thanks for the prayers!! We love our friends and family so much. You should see how many treats and balloons and gifts and goodies we have in this room right now. We're going to need a trailer to take it all home!

p.s. I'm still really irritated with the nurses. I can't believe the lack of attention on this floor. I ended up going to the charge nurse and telling her my concerns and she looked mortified when I told her about our night nurse checking vitals all through the night yet NOT CHANGING HIS DIAPER that had leaked to all of the bedding. Every time they walk in the room I just want to say, "We've got it under control, thanks!"

Officially had it with nurses!

As we mentioned, the peds floor's nurses are not as on the ball as the PICU nurses. We know that and that's fine. Their jobs are less stressful and the kids here are recovering, they aren't intensive. Understandable! But what I don't understand is why, after giving our baby diuretics around the clock to make him pee, our nurse didn't think to change his diaper once during the night. Thankfully I got up at 1:00 to check on him because I noticed that all of his bedding was soaked with pee! We had to wake him up and change all the linens so we were all awake until at least 3:00. Then this morning, Elijah's neck dressing was of course falling off and bloody again so our nurse decided to change it (this was the EIGHTH time it has been changed). There's a nurse-in-training shadowing her today so she thought this would be a good learning experience for her to change the dressing herself, even though she has never done it before and even though we told her that no one has had any success with it yet. So the almost-nurse does a horrible job and Dan and I are looking at each other like I CAN'T BELIEVE THIS! I guarantee he'll need a new dressing soon. Maybe I'll just do it myself.

We got little sleep, especially once we realized that the nurses weren't truly caring for Elijah through the night. Dan just headed over to Abbott to get his horrible arm rash checked out and Elijah and I are sitting here watching VT (of course), in hopes that a nap is in the near future.

Ok, so I've been putting this off because I'm a little stressed thinking about it. The Heart Walk is this coming Saturday and I wanted to make nice t-shirts for everyone who is coming for it and I haven't gotten around to it! Does anyone know a place that can print t-shirts quickly and cheaply? I don't even have a design or anything. Any thoughts would be helpful! If E is still in the hospital on Saturday, one of us will come down for the walk. I'm really excited about it! It sounds like a lot of people are still planning on joining us. Let me know if you're interested and planning to attend.

Our new room phone number is 612-874-4969.

Settling in

Finally asleep in Mama's arms!


Happy to be on the 3rd floor!


He's been doing this arm raising thing all day. We keep saying, "Yes, Elijah? Do you have a question?"

We just got Elijah to go to sleep after a long day. We do get to stay here in the same room with him, which makes me much more at ease. The thing that is hard to get used to is the difference in care from the PICU to here. Dan and I are basically caring for him all by ourselves up here, which is fine because he is doing really well, but it's also a little frightening because....well, he just had surgery five days ago! The nurses up here aren't nearly as attentive/in tune as the ones in the PICU. It's quite a drastic change.

I asked again about the drug withdrawals and was basically poo-pooed again. He got a little cat nap late this afternoon and ever since has been the happiest baby in the world, so the only real symptom we're seeing right now is the enlarged pupils. I guess we'll see what tomorrow brings.

We have such a good boy! As tired as he was, he was the smiliest little guy tonight. My cute cousin Ann Marie and her wonderful boyfriend Paul stopped by with some amazing homemade enchiladas and guacamole (YUMMM!!!) and Elijah had nothing but smiles for them. I really think his disposition is noticeably better than it was before surgery...and it was good before surgery!

Please pray that we can all get some good rest tonight, especially Elijah. The poor guy has missed out on so much sleep these past few days. Also, we could still stand to see more pee to come out and the fluid around his lung to disappear and maybe that will make his supplemental oxygen go away!?

We're off to try to get some sleep on the tiny couch-bed. Oh well, at least Elijah is three feet from us. He better not expect me to put Veggie Tales in for him every other hour!

So long PICU!

We are on the 3rd floor!! Dr. G didn't see a need for a chest tube, so we're going to stay on top of the diuretics so he keeps peeing like mad. He's being weaned off of the MR-850 but is still on it since his sats drop into the 80s when it's turned off. He's off all medications (except diuretics) and I personally think he's going through drug withdrawals. He has hardly slept at all since 4:00 this morning and his pupils are bigger than normal and he's suddenly very fussy. I asked the nurse about this and she poo-pooed it and said it was just because he was so stimulated in the PICU. Hmmmmm, we'll see.

We're getting situated in our new room right now, listening to our 1,209th round of Veggie Tales and listening to Elijah fuss. I'll post pics later, when things are a bit more happy.

Our man is doing great! Five days after open heart surgery and we're out of intensive care!! Ok, more later....

Giggles and squeals

Elijah was in a very good mood through the night, but he didn't sleep much. His nurse said that he would sleep for an hour and then be up for an hour watching Veggie Tales and then sleep for an hour and then up for an hour and so on. Lucky boy! I hope he doesn't think he'll be spoiled like this when we get back home! His disposition has been wonderful. He's very happy and giggly and flirty and talkative. I just got him to close his eyes for a little nap. He has been awake since 4am chatting away!

We haven't seen a doctor yet but from what we've heard through the nurses, the fluid around his lung is only VEERRRRYYYY slightly improved today. I really hope that doesn't mean he needs a chest tube, but I guess we'll see. Whatever is best for him!

Dan and I got a nice sleep room last night but we still feel like we've been hit by a truck. We have the room till 10am so we're taking turns with naps. I need to start drinking coffee!

That's about all I know right now. I'll post again once decisions have been made. Hopefully it will be soon.

Stupid neck IV!

Elijah posing with his new stuffed animals from the Rollers! Thanks, guys!




Elijah has a balloon factory in his room


Aaaaawwwww, sweet stuffed puppy from Pam, Grant & Jetson...

I got a little bit upset with our nurse tonight after the FOURTH ATTEMPT today at successfully putting dressing on Elijah's neck IV. He does have a chubby neck that makes it more difficult, I'm sure, but FOUR TIMES?!? Right before the last time, while Elijah was anticipating more trauma and already starting to cry, I asked the nurse if there was maybe a way she could make things more efficient so that he wasn't screaming his head off for ten straight minutes while she opened packages and put on gloves and did things that she could have done before starting. Sorry, but I'd like to minimize my baby's stress, especially when his blood pressure gets to 200/130 and he's so scared he acts like his toenails are being torn off. We all survived and we're praying this dressing is the last one needed!

Elijah's heart rate issue has resolved itself for the most part. Right now the only things of concern are the extra fluid (he has peed a lot today, but could still use more) and his high respiratory rate and somewhat labored breathing. Overall he has had a really good day. The drugs are out of his system and he is finally giving some more smiles and he's starting to babble again. I'm not going to say we're in the clear because this journey always seems to have bumps when you least expect them, but we're getting there!

We have felt SO LOVED today. We had two different friends bring us food: Pam and Grant brought lunch and Tim drove all the way up from Rochester to bring us dinner. Thanks to all of you! We got all kinds of balloons and gifts and it just shows how much our little man is truly loved and cared for! So many people have brought us snacks and meals and gifts and we feel like we have the best family and friends in the world.

Dan's mom has been wonderful and she has been stopping by every evening so Dan and I can get away and eat dinner somewhere else in the building besides the PICU (usually the hallway or the waiting room, if it's empty). We're eagerly awaiting eating our yummy food from the Yoders tonight...yummmm, Famous Dave's!!

Thanks everyone for all the love and support and prayers. It makes me teary thinking about how wonderful you all are. Keep praying for PEE and for no chest tube tomorrow! Thanks! xoxoxoxo

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.

Smiling more

We've gotten a few more smiles out of Elijah so far this morning. Dan and I got a comfortable sleep room last night finally, so we were in there from 9:30pm-6:00am. We figured we'd try to get some sleep since we were totally exhausted but it turns out we didn't sleep much after all. I was up worrying about Elijah being alone (without us) and Dan was up scratching the mysterious itchy patch on his arm. Elijah didn't have a good night. :( He didn't sleep well and he cried a lot. I told them to call me if he started crying a lot and they didn't!!! I feel so bad! Poor guy. He was wondering where he was and where his mommy and daddy were.

Dr. G just stopped by and said that Elijah still has some fluid around his right lung and that if he can't pee it out today that they will have to put in another chest tube tomorrow to drain it. PEE, kid, PEE!! His belly also looks quite large this morning (even more than usual) so we're thinking he's either holding onto extra fluid there as well or he has some extra air. He did finally start drinking apple juice late last night. We were just cleared to start giving him milk so we'll do that shortly. It's a good thing because he's been doing the sign for milk. He's starving! His lungs sound pretty junky today so we're hoping he can clear some of that out and start coughing a bit more. His belly is still working hard and retracting, so we're leaving the nasal cannula in for now to help him as much as possible.

He's such a good boy. He just lounges in his crib and watches Veggie Tales and Baby Signing Time and takes naps periodically. He hasn't had pain meds in a while and hasn't shown signs of being in discomfort so that's a good sign.

Overall he is doing very well. His body just has a few little things to sort through before we can head up to the third floor. Please pray for continued healing for his lungs and heart and for lots of PEE!

A bit more calm now

King Elijah, sprawled out and watching Veggie Tales


Poor guy, not feeling well, but at least he stopped crying!

We finally got Elijah calmed down a bit, but he still won't sleep and he's still a pretty crabby guy. We've only seen a slight smile when we first turned Veggie Tales on. He must have a really sore throat from the tube because he won't have anything to do with the bottle. He is doing better, though! He still has the MR-850 giving him oxygen because his tummy is still retracting a bit, but it's not too bad. All the doctors have said that he looks great.

We're hoping for a nice night of rest and further healing for him. Our nurse is still giving him doses of tylenol and morphine to help with the pain and with sleep.

Today was quite the day. Dan and I feel like our heads are spinning. But we know it could be so much worse! We are just thankful that we have our son right now and that he is in such good hands and that he is doing so well. He is amazingly strong and brave. We couldn't be more proud! Thank you all so much for the huge amounts of prayer. We have felt it so strongly!

tequila please!

Anyone helping out with meals in the next few days can just bring cases of tequila!

Elijah was extubated at 11:00 and the breathing tube is still out. He has been VERY upset since waking up, probably due to pain, hunger, tiredness, anxiety, etc.. We are practically doing handstands and cartwheels trying to keep him happy. He has even gotten a few nice doses of morphine but still won't sleep! I think he just wants to be home!

His breathing is a bit labored, so we have an MR-850 nasal cannula on him. This is a higher pressure oxygen flow going directly into his nose, assisting him in his breathing. His sats and heart rate and blood pressure look great (when he's not mad), so these are all good signs.

He was crying so much that his neck and arterial IVs both started gushing blood. It took two nurses to hold him down to get that under control. It has not been a fun past few hours but I think it should get better from here.

Please pray for the extubation to continue to be successful and for our man to get some sleep. Thank you for checking in!

Ditching tubes!

Do you notice anything missing?

Dr. Moga removed Elijah's chest tubes this morning and wrapped up and taped his pacemaker wires to his belly just in case we need to access them. He said that he was very pleased with how E has done and that he felt he was ready for extubation today! Now we're just waiting for it all to fall into place and happen! He is still retaining a bit of fluid around his right lung, but we are PRAYING for him to tolerate it well and breathe just fine on his own.

I woke up this morning telling myself that I was just going to trust that God has this under control and that our wonderful doctors and nurses are His instruments and that all Dan and I have to do is care for our little Elijah as best we can! (btw, in the book "Walk on Water" that we're reading that Dr. M is in, he even acknowledges that he is merely an instrument of God and that it's not the surgeons who are behind all the work, even though most surgeons are egotistical enough to believe that. How cool is that?!)

p.s. Dr. Moga DENIED a picture with Elijah this morning! He said it was superstitious to take pictures with the surgeon before being on the way out of the hospital. I suppose I'll forgive him....but I felt like an idiot. Who denies pictures?!?!? Superstitious surgeons, I guess.

Wiggling, drugs, excellent doctors and wonderful nurses

Elijah has had some more rhythm issues tonight with his heart. Every once in a while the beats are prolonged and uneven. This started happening around 5:00, of course when no doctors were around, so I've been freaking out about it ever since. Our nurse Terri (more on her wonderfulness below) assured us it was probably fine and she even brought in Dr. Baker to assure me it was nothing to worry about. Sorry, but I need to hear it from Dr. G! Finally, Dr. Gremmels came around about 5 minutes ago (does he EVER go home to his family???) and looked at the heart monitor and said, "Ok." I said, "Well? Isn't that alarming to you?" He said, "Alarming? Zero!" Apparently the pressures in his heart are getting used to functioning in a whole new way and it's going to take a few days to be totally normal. THANK YOU, DR. GREMMELS! You just saved me from having a sleepless night!

When we were in the hospital for Elijah's first surgery, we had a wonderful night nurse named Terri who we fell in love with. She was excellent and compassionate and she loved Elijah. Well, we have her again tonight! I am so happy about this. Our little munchkin is in GOOD hands tonight, so I can sleep even better!


Terri, we love you!

We have had to give Elijah A LOT of drugs today to keep him calm. Every time they start to wear off (pretty often), he wiggles and cries and flops around. We're praying for a good night of rest so he can be ready for extubation tomorrow, if Dr. Moga OKs it.

I asked about the nose intubation and apparently they do it on all cardiac babies because that is the only way they can do a trans-esophogeal echocardiogram post-surgery (an echo through the inside of the esophagus, which is much closer to the heart and is much more accurate than one given through the outside of the chest). It is also more comfortable having a tube up your nose as opposed to your mouth, apparently.

Ok, we're going to find out if we get another gurney tonight or an actual bed! Have a good night everyone. Thanks for checking in, thanks for the prayers and thanks for those of you who have given us food! We haven't had a chance to personally thank you all yet. We'll get there! xoxoxoxo

Wanting to wake up!

Our wonderful nurse Amy switched some pain/sedation meds around for Elijah this afternoon and he didn't like it too much. It apparently wasn't enough for him because he was mad and squirmy and trying to wake up. His blood pressure and heart rate went way up and he cried tiny little tears out the sides of his eyes. :( We finally got everything stabilized again with a good heaping EXTRA dose of morphine AND versed. He's loving the drugs right now! I asked if they could split the IV line and give some to Dan and me! Kidding.

Now we're chillin' again and just getting through the day, hoping that tomorrow is the big extubation day. We will trust Dr. Moga!

Thanks for checking in!

p.s. Yes Krista, he is intubated through the nose. That's all they've ever done to him here (except for the time last year when they had to reintubate quickly).

Waiting..

First and foremost, Elijah is doing SUPER. All of his stats are strong and steady. His oxygen sats are in the high 90s, his blood pressure has been great, his heart rate is good and steady and his temp has stayed low!

Last night, our night nurse was pushing to get Elijah extubated today. I didn't feel comfortable with it and got a little bit upset. After Elijah's last surgery, he was extubated and had to be re-intubated and it wasn't a fun thing for any of us. I have been feeling like we should be on the safe side and wait one more day (not that I'm a doctor, but that's my gut mommy feeling). So we were all eager to hear what Dr. Moga said this morning.

He just stopped by and said he thought we should hold off one more day. Yay! I knew it! We'll let Elijah pee a little bit more (he's still holding onto to a little excess fluid) and rest up for one more day. Today we'll be trying to keep him sedated with Versed and Morphine so he doesn't yank his tubes out. It should be another fun day of wiggle management.

Dr. Moga's words were: We have had very good results from a very difficult problem and we want to keep doing things in the proper order. Of course, he said things much more eloquently, but that was the gist.

Last night they ran out of sleep rooms here in the hospital so Dan and I slept on gurneys in a room off of the Emergency Department. Not the best sleeping arrangements, but at least we were still just down the hall from our chunky monkey.

Thanks for the continued prayers. Extubation will be a huge thing, so say some specific prayers for that to be successful and timed perfectly!

p.s. I apologize for not getting back to everyone who has emailed or called. We are not allowed to have our cell phones turned on here in the ICU, so we don't even get the messages till we go to sleep at 9-10p. We do have a bedside phone number to call, if you'd like to get a hold of us. It is 612-874-4929.

Quiet day so far

So far, we've had a very quiet day here in the PICU. Elijah has maintained a good heartbeat (w/o help from the pacemaker), good blood pressure, a good temperature and good oxygen sats. What a champ! He has even started to finally pee a bit in the past few hours. He has been trying to wake up most of the afternoon, so we're keeping him sedated as much as possible. He's a bit of a wiggle worm right now, even after a nice dose of Morphine.

We are not yet out of the woods and still have a lot ahead, so please continue to keep him in your prayers and THANK YOU SO MUCH for the prayers so far!

More later.....just wanted to get an update out quick.

Another day

Our strong boy (filled in ickiness with black so you don't have to look at blood)

Elijah's heart rate and temp finally dropped last night after they gave him some rhythm medication. He had all the nurses and doctors (and mom and dad) on their toes for quite a while! Little stinker. Dan and I got some sleep (as much sleep as you can get with a bar running down your back and a door banging constantly five feet from your head). Through the night Elijah had another high temp/high heart rate episode and they again had to administer the rhythm medication to get things under control.

Since we've been here at 7:00, his heart has been beating all on it's own at an awesome rhythm with NO help from the pacemaker. This is good news! We're praying for no more scary episodes today and for his little body to rest and get used to his new anatomy. His little body is adjusting to the major work that was done to it yesterday.

He could also stand to pee a bit more and he has a bit of air trapped outside his right lung that they are trying to drain with his chest tubes.

They want to keep him sedated and resting for the next day or two so his little body can heal. All in all, he's doing well. He is an awesome boy.

I forgot to mention yesterday that Dr. Moga WAS able to use a bovine valve, which is very good news!

We are overwhelmed by the amount of prayer and love that has been sent our way. Thank you so much!


Do you see the blue number?!? THOSE ARE HIS O2 SATS! We have never seen a number that high! I actually cried when I first saw that on the screen.




Where's Dan? (Thank you so much for the balloons, Amy, Mitch and Wilson! They brightened our day and have helped to add character to this boring old ICU room.)

Recovery has begun...

...and it's been a bit rocky for the past few hours. Elijah has had a high temp since coming out of surgery so we've been constantly trying to get it lowered. Especially now that his heart has decided to override the temporary pacemaker and beat at 210 beats per minute!! That is too high! They just gave him a medication for rhythm in hopes of lowering his heart rate, so right now we're looking at a 186 heart rate, which still isn't great but it's better than 210!

Poor kid, his body has just been through so much. We were told from many different doctors today that this surgery was a very big deal. Hopefully it will just take his body a while to adjust and that things will normalize soon. In the meantime, I might have heart problems myself! We had just eaten dinner before this all started to happen and now I'm wishing I wouldn't have because my tummy isn't feeling great.

It may be a long night. Please keep our man in your prayers tonight. Pray for a lower temp and a lower heart rate!

We do have pics but probably won't get them uploaded tonight.

Thank you for all of the wonderful comments! Elijah is so loved!!!

Better than I could have ever expected

Those were Dr. Gremmels exact words when describing how Elijah did! They are closing up his chest right now and everything is functioning perfectly perfect at the moment. We will get to talk to Dr. Moga in about 45 minutes and shortly after that we'll get to see our boy in the PICU!!

I'm so proud of him! He's such an amazingly strong boy.

Please keep the prayers coming for a successful recovery. We feel your prayers and love so strongly right now, as Dan and I have had a very peaceful day. Thank you so much.

Going good!

We just got an update from Dr. Gremmels and everything is going well! Right now the VSD is patched and Dr. Moga is replacing the valve. It looks like he is going to have to put a stent in the pulmonary artery because it looks a bit small, so that is next on the list. The next time we see Dr. G hopefully things will be finishing up.

So far, so good! Keep the prayers coming!

Headed back

They just took our chubby boy back to the OR about a half hour ago. I'm feeling surprisingly peaceful today (thanks to all of your prayers). Dr. Moga estimated that the surgery would be done around 12:30. We'll get updates throughout the morning. Thanks so much for all of the prayers you've sent our way. It's overwhelming just thinking about it! We feel so surrounded by love right now and that helps make this day a little bit easier.

Some pics from this morning...


Tired, hungry boy




Grandma and Elijah enjoying some bubbles. Thanks, Samantha! They were a savior as he started to cross the line into tired crabbiness.

14 hours and counting

The flirty face


His scar has faded so much you can hardly even see it anymore!

I thought I'd share some cute pics from tonight, right before the chubby man went to bed. We got PJs from the hospital today so we wouldn't have to change him in the morning. One less thing to worry about. We got some good snuggle time in and put him to bed early so he can rest up and hopefully kick the rest of the snot that is hanging out in his nose.

I am so thankful for all of the wonderful comments that were left for us today! It means more than you'll ever know! Thanks so much for checking in on our little man and for leaving words of encouragement for us.

I'm terrified about tomorrow but at the same time feel peace and excitement about having a baby with a heart that functions normally! I just cannot imagine!

I lost the bet!

We are on for surgery tomorrow! Dr. Gremmels didn't seem super concerned about the congested nose. He said it might cause Elijah to be intubated a few days longer than usual, but he doesn't want to put off surgery much longer. His heart is screaming to be fixed! His sats were at 49-53% today. Yikes.

He has been such an amazingly good boy today. Even when he had to get blood drawn, he was so strong and brave and only cried when the needle was in his arm. He flirted like crazy with Dr. G and everyone else we saw and he had everyone giggling. Aside from the congested nose, he appears to be feeling pretty good today. He's almost back to his usual giggly, silly self.

We'll get to the hospital at 6:00 tomorrow morning and surgery starts at 7:30. Dr. G expects a 5-6-hour surgery. Dr. Moga will be replacing his shunt with a valve and he'll be fixing the hole and possibly doing some work to some arteries if needed. Expected recovery time is two weeks in the hospital.

Please PRAY for our boy and for Dr. Moga to be at his very best tomorrow. Thank you so much! We will write updates throughout the day.

DEEP breath, ug, here we go!

Progress

This morning I was lying in bed wide awake at 5:00 a.m., anticipating baby squeals, when I started to pray. Hard. I prayed for PROGRESS. Elijah woke up a little while later and he still had a temp and he was a bit crabby and pale so I thought my prayer wouldn't be answered. But then the day went on and his temp went away (he was actually on the cool side most of the day) and he seemed to be kicking this bug that he has been holding onto. He still has a congested nose and he's utterly exhausted constantly, but THE FEVER IS GONE! YAY! He ate pretty well and drank lots of liquids today, and those are all good signs. My prayer tonight/tomorrow morning will be to have NO MORE SNOT.

Our pre-op appointment with Dr. Gremmels is at 11:00 tomorrow. Dan and I have a bet. I think the surgery is going to be postponed and he thinks it won't be. It's tough. Elijah's heart is in serious need of repair, but I'm thinking Dr. G will err on the side of caution and put a few more days behind him with this cold. We will see!

I never would have thought I'd be so excited to get my child into the OR. Right now I am feeling so eager to get him in there and get him out. Every day we see a few more signs that his heart is failing very quickly. He is just so ready. I'm strangely excited to have operating day come! Let's hope that he will be healthy enough for it to be on Tuesday.

My wonderful boss and his lovely wife are coming over to our house tonight while Dan and I go out for dinner. Elijah is fast asleep already (like I said, TOTALLY exhausted boy!) so all they should have to do is sit in the living room and watch tv. We're excited to have one last outing before the big day. We haven't had a legitimate date night in quite a while, so I'm very excited! Thanks Terry and Donnita for helping us out! We're so thankful for this time away from home, especially after the past few grueling days.

So please join us in our prayer for Elijah's snot to be gone tomorrow!! Thank you. And thanks for checking in. We love you all.

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.