Another good day

Yeah. That's my cool scar (and my giant belly)!


Kung fu moves


Happy baby


SOOooooooo big!!

It was another BEAUTIFUL day here in Minnesota. It's about time. There was such a change in moods here in the Porta household. As I said in my last post, it has been a LONG winter on many different levels for us, so this nice weather is such a welcome change. It's hard to believe that three weeks ago I was a total wreck because my baby's heart was making him very sick and I was anticipating something bad happening every second of the day. Now we have a beautifully healthy, spunky boy who is doing new things every day (besides napping).

Elijah now says "Mama" and "Baba" (Dada) discriminately and we are working on "ball." He now does the SO BIG motions with his hands when we say, "How big is Elijah?" He does the sign for ALL DONE and MILK and he is working on BIRDY. It's so cute because whenever he is in a situation he doesn't like, he will do the sign for ALL DONE feverishly, over and over. The other day he was sitting on the bed in the loft and he pulled on a toy too hard and fell backwards onto the bed. He startled himself but didn't cry. He started signing ALL DONE as if to say, "I don't like this! What just happened?!" He has so many new, cute faces that he makes that Dan and I laugh at constantly. Things just seem to be clicking much more now than they did before surgery. His fixed heart has changed him! He is a new man and he's ready to take on the world.

I sometimes forget how complex his recent heart surgery was. I keep hearing Dr. Moga's voice in my head saying, "This is a VERY good outcome to a VERY difficult problem." He had a whole lot of major things done to his heart in this last surgery and he really could not have had a better outcome. We feel so fortunate. Elijah is an amazing, strong little boy.

I worked from home again today so I didn't get to enjoy the nice weather much, but Dan and Elijah got out for a bit. I'm back at work tomorrow through Thursday and then early Friday morning Dan and I are headed to FLORIDA! I'm excited but nervous. I have mixed feelings. I need to let it go and have a great time at Mike and Julie's wedding and release some of the tension that has built up over the past few months. It'll be good.

Thanks for checking in on us. We love you all so much! Elijah says, "BaambababbababMAMAMAmamammmamamaBamba!" which translates to: thank you for all the prayers, you are all wonderful!!

Day OUT

Parachutes are fun!

I feel like we have been imprisoned since October. Elijah caught a really nasty cold in early October and then he had his heart cath and then the nasty cold, snowy winter hit and during that time we hibernated and endured more sickness and then he had another heart cath and then his health started to decline rapidly and we spent time in the hospital and then he had his surgery and recovery and the winter weather continued on, and.......now, finally, today we feel FREE! We aren't in the hospital and we aren't sick and it's not winter and we can actually get out! After seven months of basically not going anywhere unless absolutely necessary, this feels wonderful!

We went out for lunch today and Elijah was in total heaven! I think he has forgotten that there is a world outside of our home and the yucky hospital. Then we went to the mall and strolled around. Then we came home and sat outside and played. Then we went for a walk in his wagon that my awesome college friends gave him last year. Then we took a trip to the grocery store in his new big boy car seat. We heard a constant stream of laughter coming from the back seat the entire way there and back. It's such a new perspective for him to look forward and he very obviously loved it. You would think we were at Disneyland instead of the grocery store, listening to the squeals of delight and watching the constant leg and arm flapping that occured while there.

It was a good day! We are still trying to figure out the napping, but we really can't complain. Elijah is feeling so good right now and he is such a good, happy boy. Dan and I are constantly saying to each other, "What did we do to deserve such an amazing baby?"

I better make this quick. Dan is grilling up some dinner so I should go help! Thanks for checking in!


Elijah was helping me pack my parachute today! He's excited to jump out of a plane soon (in 17 years).


Look at that pretty face


Whoa, look at all of that hair! This was Elijah's first wagon ride. He loooooved it.


What is this sunshine stuff?

Some of us are tired..

..and some are not. Elijah is usually exhausted by 5:30 every night and asleep by 6:00. Not tonight! I just had the most surreal, unusual evening with him. He was smiley and giggly and not showing a single sign of tiredness so I kept him up till 7:15. Even though he still wasn't acting tired, I decided to try to put him to bed anyway. I rocked him for a bit in his room and he kept grabbing my nose and laughing. I finally put him into his crib, expecting tears like usual, but he just rolled onto his side and went to sleep. Unbelievable! I stood outside his door scratching my head like, What just happened? It was wonderful!

Dan and I switched off taking naps today and even after a large 3-hour nap, I still feel exhausted. What is the deal? I almost feel like I've had too much to drink I'm so tired. The hospital really kicked our butts. It is taking forever to get caught up.

I did get a few things on my List crossed off today like getting my hair cut FINALLY (thanks to the wonderful Jai who came all the way to our house for it!) and sorting through the Heart Walk t-shirts. I should be able to get a shirt to everyone who showed interest in them, so hopefully I can get those mailed out very soon. If you asked for a t-shirt, would you mind emailing me your mailing address to mmporta@gmail.com? Thanks!


Look at my new big boy car seat! Thanks Grandma!








I have such big, pretty eyes and curly hair! My mommy always tells me I'm pretty.


Brushing my teeth before bed. Look at my belly!




One last thing. Please keep this little girl in your prayers. My good friend Cara has a niece, Ellie, who just got diagnosed with a brain tumor that carries a 10% survival rate. She will be starting radiation soon so please pray that she will be healed and fall in that 10%. Here is a picture of Ellie.

Napless in Minneapolis

I haven't had much of a chance to write an update this week. Sorry! I've been busy working from home and also trying to help out with Elijah when I can. I feel like we are in total maintenance mode right now. We are doing enough just to get by. I have a list of things that we need to do, that we are so far behind on, but we haven't had a chance to get to any of those things. I just told Dan that our #1 priority tomorrow is SLEEP so we can actually have the energy to get some of those other things done.

Elijah is still not napping well. He will usually only sleep for 20-30 minutes in the morning and 30 minutes in the afternoon. This is not enough sleep, Little One! I think it's due to a couple of things: He's still experiencing some anxiety from the hospital and it's uncomfortable to be on his belly right now and that is how he sleeps best. I think as he heals, naps will continue to come easier.

Other than the napping issues, he is doing great! He has so much more spunk. I love it. THIS is what we've been waiting 14 months for! It is such an amazing change. Today I noticed so many new things he is doing that show how smart he is! I could just eat him up with a spoon.

We booked our tickets! Dan and I are going to Florida next weekend! Mike and Julie, we are SO EXCITED to be with you on the beach as you get married. Yes, I'm freaking out about leaving the chubby baby, but all will be well. He could not be in better hands than with my sister Lissa.

p.s. It's a good thing we will be in Florida next weekend. It helps to ease the pain of being HERE where it is storming right now and supposed to snow tomorrow when we could be in Maui! Yes, Elijah's health is plenty of consolation, but it's still hard not to think about.

p.p.s. I will take some pics of the chunky monkey and all of his smiles very soon, I promise!

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.