4 months old!

Getting hugs from Pete the Puppy



Today Elijah is four months old! Old man. So apparently the docs don't think a whole lot of his rapid breathing and slight decline in eating. It's not "acute" enough to be of concern right now. There are two things that can be going on: 1) His body is still recovering from surgery and healing up, or 2) He is getting too much bloodflow to his lungs, which is making his body work extra hard. This option is entirely possible because he does have those extra collaterals that are supplying extra blood to his lungs. We just have to wait it out for a while and keep a very close eye on him. If option number two is what's going on, we'll most likely have to do an angiogram sooner rather than later to see what is going on and possibly correct it.

The sleeping is getting SLIGHTLY better. I've noticed tiny amounts of improvement these past two days. We'll take tiny. Today Elijah napped on my chest for TWO HOURS! This has never happened. Granted, I didn't get a thing done this morning and I had to soothe him back to sleep about five times, but at least he slept for two hours!

A bit of worry

On top of not taking good naps and making Mommy and Daddy nearly insane, Elijah hasn't been eating as well these past few days and his breathing is getting very labored. One of the main things they told us to look for is a decline in eating, so I have a feeling that we're going to have to take him back into the cath lab soon for another angiogram. It's possible that he's getting a lot of extra bloodflow to his lungs (thanks to those MAPCAs collaterals) and that is what is causing all of this. I pray that he heals up all on his own so his body doesn't have to work so hard. Poor guy. Please no more hospital please no more hospital please no more hospital please no more hospital!!!

Sleepless days

The sleeplessness that Elijah is experiencing during the day is getting ridiculously out of control, but we are trying to hang in there. He is sleeping great at night! We're just glad to be dealing with "normal" baby issues right now. When he's happy and rested, he's soooo happy! Today we didn't see much of that, but hopefully tomorrow!


Sticking out the tongue


Dressed and ready for church


Refusing to smile today, but sitting up like a big boy!

To be a heart parent...

Terri, another heart mom, sent this to me. Soooo true!

What does it mean to be the parent of a child with a heart defect?

It means going into your baby’s room a dozen times a night just to check to see if he’s still breathing.
It means standing over the crib to watch the chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby’s face to try and hear him breathe.
It means that when you don't see the chest move and you don't hear him breathing (because your own heart’s beating is drowning out any other sound in the room), you put your finger under the baby’s nose to feel the air on your finger – until you wake the baby and it stirs – and you're thankful, so thankful that he’s still with you.
It means feeling a huge sense of relief when he hears you and opens his eyes and smiles.
It means saying a prayer of thanks for another day.
It means measuring out his medication and panicking if he spits some of it out. How much did he spit out? One cc? Two or three? Then wondering if you should guesstimate how much more he should have and if you’d overmedicate him.
It means checking his nail beds against your own to determine how blue he is today.
It means asking your husband, your mother, or your sister, “Do his lips look blue to you?”
It means snuggling him in an extra blanket for fear he won’t be warm enough.
It means worrying that even a sniffle could cause an infection that could harm his heart.
It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls his name and takes you straight back to the examination room.
It means knowing that everyday is a blessing and a gift.
It means knowing that you are the luckiest person in the world, just to be a parent.
It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.
It means praying for a miracle to save your baby’s life.
It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief.
It means praying for the will to live, even if your baby doesn’t.
It means your own heart knows a pain, no parent should know.
It means feeling weak, helpless, angry, and depressed because your child’s fate is out of your hands.
It means feeling strong, determined, and brave because you know you have to be.
It means your love knows new unlimited boundaries.
It means your pride in your child’s accomplishments is unparalleled.
It means your pain has taught you a deeper sense of compassion than you ever imagined.
It means we are all united by the same feelings.
It means that we all know the mixed up emotions of dealing with death – but more importantly of living with life.
It means that even though we are strangers, we are more to each other than friends could ever be.
1996, by Anna Jaworski

Post-op visit

Elijah had his post-op check today and it went well! His oxygen sats were at 89%, which is good. His heart sounded good, his xray looked good, his incision looked good.. Dr. G wants to see him back in a month for another check-up and do another heart cath in late August. The results of the heart cath will tell us when his next open heart surgery will be. Also, Eli gained ONE pound in just ONE week! We had actually been thinking that he hadn't gained much, but we were wrong! He is now up to 12 lbs. 12 oz.! "Amazing!" is what Dr. Gremmels said to that. :)

We have been a bit worried about letting Elijah cry too much as we try to get him to nap during the day. He refuses to sleep for more than twenty minutes at a time during daytime hours and we have been nervous to let him cry for more than a few minutes at a time because of his heart condition. We asked the doctor today if we are physically going to harm him by letting him cry in order to get him to sleep better and he said (thankfully), "No!!!" He said that's often the case with parents of heart babies--they are worried about possible damage they will do to their babies by not picking them up right away when they start crying. The bottom line is, in our situation, we have to let him cry a bit because otherwise, HE WILL NOT SLEEP during the day, which makes for a very unhappy little man, and that makes for very unhappy Mommy and Daddy. We need to help him keep his body rested. He is such a wonderful, happy baby when he's rested and we need to make sure he stays that way.

We'll post more pics soon of the cutest baby on the planet!

Honestly, can you get any cuter?

Here are some pics we took today. Dan is the good photographer. We had another day of staying at home so we can get this nap thing down. Elijah did pretty well. We had a minor bump trying to get him to sleep in the afternoon, but we think it will just get better from here. Overall, he was a MUCH more content baby today. Getting enough sleep does wonders!


Snuggling with Baloo and too cool for the sun


The cutest picture ever! Look at that sweet face.


Daddy lovin' on Eli

I just love this guy so much

Elijah is such an amazing little guy. Every day we find new reasons to love him!!! We have recently found that we are having "sleep difficulties," but we are trying to deal with that the best we can. We bought a book today that has given us great insight. While reading it, we both said, "Uhhhhhh, duh, why didn't WE think of that?" So hopefully the crabbiness/sleeplessness gets better in the next few days. Here are some fun pics to share:



Eli has been crabby these past two days, so here we are mocking him a bit. Sorry Elijah. (He was WAILING in this pic...)


Here's a pic of the three of us, Terri. :) We don't take enough of those.


The big pudgy man, while Mommy is trying to burp him. He was burping and sleeping at the same time.


Elijah outside tonight, enjoying the wind on his face. Alise, see the prayer rock that you gave him in his hand! He grabbed onto that and didn't let go of it for a very long time. :) It was so cute.

Pics

What a sweet boy. Don't you just want to SQUEEZE on him???

Our baby is awesome

Elijah is such a champ. It's so hard to believe that less than two weeks ago he had open heart surgery. Babies are sooo resilient and bounce back so quickly. He hasn't shown any signs of pain in almost a week and he is SO MUCH HAPPIER. His disposition is totally different than it was before surgery. He was getting increasingly crabbier and more agitated beforehand and now he's a completely laid back little man. He will sit and talk to us and smile for hours, and that's something that he wouldn't do before. It's so wonderful!!! Thank you Dr. Moga!

Our camera batteries died today, otherwise I would have posted some new pics. I will do that tomorrow. He is so sweet! I can't believe what a handsome, sweet little baby we have.

I have to tell you all about the graciousness of the company that I work for. They realized the need for me to recoup during this time and have given me a bit of time away from work to do that. I don't know of another company that would do that for their employees. Dan and I are really having a bit of a hard time dealing with the aftermath of our baby's surgery, so I am VERY appreciative of this. Thank you Zinpro!

You won't believe this!

We got sent home today! We were expecting to be in the hospital for another couple days, but Dr. G said he was pleased with everything and since Elijah is eating so well, to head home! We couldn't believe it! So here is our man, tired from the whole experience and already taking a snooze (hopefully a long one so Ma and Pa can rest, too) in his swing (nice arms).



We have to bring Elijah back in for some check-ups in the next week here, and then the plan from there is to do another heart cath in a couple months and see how his collaterals that didn't get surgery this time are growing. If they grow the way we'd like them to, Elijah won't need another surgery for 9-15 more months. If they don't grow the way we'd like them to, he may have to have another surgery in a few months AND another open heart in 9-15 months.

I thought by this point I'd just be relieved to be done and feel nothing else, but that's definitely not the case. I feel like I'm a totally different person after this experience and that Dan and I need time to heal up, too...but in a different way than Elijah does. I feel so many emotions right now....mostly, I feel RELIEF that this first surgery is done. I also feel sadness that our man had to go through something like this (even though he most likely doesn't have a clue). I feel like I don't know how in the world we can possibly go through something like this again. I feel extremely emotionally and physically tired. I feel overwhelmed about all the love and support that was given to us over the past 10 days. I feel even more love for this baby than I could have ever imagined. I feel an amazing amount of love for my husband for being such a wonderful daddy and hubby and for being my rock through all of this. I feel so thankful that God has given me everything I have!

Ok, enough sharing my emotions. We are going to try to sleep now. We are weary!
Thank you SO MUCH for all the support and love. Our little man's journey certainly isn't done, but getting this first step behind us feels amazing.

Oh and one more thing....gotta brag about what a champ Eli is. We had some nurses tell us that typically after surgery, heart babies are crabby and mad and they don't eat and they just cry all the time. They even have a term for these babies: Cardiac Crabbies. Well, I hate to jinx anything here, but our little guy is much more content, smiley and happy than before and he is eating better than he was before. He is defying the odds! He is amazing!!!

p.s. All the nurses LOVED Elijah and thought he was the cutest baby in the hospital, and he was such a little flirt and flashed his awesome little smile at all of them. :)

Happy boy

Yesterday Eli laid like this with his arms straight out at his sides for the longest time. I think he just enjoyed stretching out with his "free" arms. It was so cute.


More arm stretching


Big yawn

Hello, Mama here. One thing the doctors and nurses have been telling us is that Elijah will have a setback in eating after this surgery, so that is what we have been expecting. That is why we are all in awe about the fact that he's actually eating MORE than he was before. Setback? Not for our man! He likes his food more than ever and that is great great news! Not only is he a better eater now, he's also much more content, smiley and just generally more happy. My best guess is that those lowering oxygen sats were starting to make him feel yucky. It's like we have a new baby! And his cheeks are even pink for the first time.

We should hopefully be moving up to Recovery today. We've now been in the ICU for 9 nights, so a less hectic environment (and more privacy) will be quite nice. We're not sure how long we'll have to stay there yet.

Elijah is still doing great. His breathing is still more labored than it should be, but we are keeping a close eye on it. If anything keeps us here longer than we had hoped for, that will probably be it. He gets nebulizer treatments every couple of hours to open up the airways in his lungs, so that has been helping. We still haven't heard back about the cultures that were sent in, but I'm guessing that if he had an infection we'd know about it by now. The yellow stuff in his lungs was most likely old blood (we hope).

It's been a very trying 10 days, but we definitely feel we are around the bend now and on the home stretch for this recovery. We've appreciated all of your prayers sooo very much, and thanks also for the meals and phone calls and emails. We have the most wonderful friends and family in the world.

Good Tired

Elijah had another good night and continues to eat well and be an overall content little man. His neck IV line got bumped out of position and the Dr's were thinking about putting a new one in (which would have meant more sedation) but they decided to just take it out. He's off his Milrinone and the other meds/supplements he takes can be given orally (potassium and lasix). It's very nice to have all those lines out of him, although he'll have to endure heel pokes now when they want to take blood (which will hopefully only be once a day from now on).

His breathing looks better but they want to be cautious so we will be in the ICU for one more night. Elijah did get moved to a side room last night so at least he can have a quieter more comfortable space to get some good rest in. As long as he continues doing well through another night we'll be moved upstairs in the morning to a recovery room (even nicer, bigger more comfortable rooms where we can sleep next to him).

Ma and Pa are a bit tired from the week and all that's happened, but are feeling very good about our boy and his progress. We're hoping and believing that's he turned the corner and will continue to heal up very well.

Thanks again for your prayers and support. We are so fortunate to have so many people standing with us.

Smilin' Sunshine!

Elijah is doing well. The tube is still out and it looks pretty certain that it won't be going back in!
He had a good night, although he was a bit hungry. They let him have a little glucose water before he went to bed and he sucked it right down in about 5 seconds. They continued giving him that periodically through the night and then this morning the Dr. let him start having Mommy's milk again.
We've been able to hold him a lot and he's been a happy, smiley boy!

Today should be a low key day of feeding him and watching how he does. His breathing is still a bit labored but the Dr's don't seem too concerned. His lungs have been sounding good and the X-rays have been clear.
He should be able to get his armed freed from all the IV's in it later (the line in his neck will stay until he's ready to go home) and tomorrow they're planning to take him off his Milrinone (then he'll be drug free!).
The nurse is also trying to get him to a side room so he can sleep better.

It's very nice to have our alert boy back and hear his little cries and coos (they sound quite funny because he's a little hoarse from the breathing tube).

Here's some pictures from right after the tube came out yesterday and this morning. He's been loving the little mobile by his bed and of course staring at his beautiful Mommy!

Warning: The following pictures contain the cutest/most handsome child EVER!




No Tube!



I remember that gorgeous face.



Morning Smiles



Loving the Mobile



Wow, what a wonderful Mommy!

De-Tubed and Waiting

Elijah was extubated again at 2 today. He's really happy with no tube in and has been smiling a lot. He is still breathing a little heavy and working more than the Dr's would like. They are giving some nebulizer stuff every now and then to try to loosen up his lungs and help him breath more freely.

He looks a lot better than Monday but needs to have a good couple hours and breath easier before we are out of the woods.
He's such a strong, tough little guy (he spent all morning without drugs or food and was in a good mood despite all that), please pray that the tube stays out and his lungs adapt quickly.

We'll update you all later and post some good smiley pics of the boy!

Another day

What a sweet boy--lovin' on Baloo the Bear



Eli had a good, quiet night. His xray looked good this morning--even better than yesterday's. So far we've talked to all three docs (separately) and they all sounded positive about trying extubation again today. Now the three of them need to talk to one another to make a final decision. They are being super cautious this time, which is good. It looks like Elijah isn't breathing nearly as hard as he has been the past few days. Personally, with my honorary medical degree that I should have by this point (just kidding), I think he's ready. Yesterday I wasn't so sure, but today I think he is. He isn't on any sedation right now, so it's difficult to see him squirming and basically having to hold him down so the tube doesn't move around and bother him too much. Hurry up and make a decision!!

His oxygen sats are kind of high for him right now--low 90's. That may mean that he is still getting too much bloodflow to his lungs, in which case they MAY have to do another catheterization and put a coil into one of his collaterals. Hopefully we do not have to go that route.

His prelim cultures came back showing no infection, so that's a good sign. He is still getting gunky secretions out of his lungs, but it sounds like that is pretty normal, considering all the moving around Dr. Moga had to do to his lungs while he was working in there. Once he gets the vent out, he can start coughing some of that junk out on his own.

I CANNOT WAIT to hold him! I pray pray pray that I can do that today. We will update again once the three docs have collaborated. Hopefully that is soon so we can stop doing wiggle management. :)

p.s. I had a bit of an altercation with a nurse this morning. My mommy side kicked in and I knew she was being careless and I almost punched her lights out. Don't mess with me right now. Grrrrrrr....

The rollercoaster continues

The plan was to sedate him and keep him comfortable till they attempt pulling the tube tomorrow, but apparently his tolerance is up and nothing is affecting him anymore. He has gotten a dose of Atavan and also Morphine and NOTHING! So he's wide awake...and he needs to sleep! I think there's another drug they're going to try, which I HATE. I hate the thought of all those dopey drugs coarsing through his veins.

Also, some more potential scary news. While suctioning his lungs a few minutes ago, the nurse found his lung secretions to be somewhat mucousy and yellow, which could possibly indicate an infections, which would be very NOT GOOD. That news made me pretty upset because things could get just awful if he has an infection. The nurse sent in cultures and we'll get the preliminary results back tomorrow.

This is the wildest rollercoaster I've ever been on in my life. I can't believe all the ups and downs we have experienced...and the ride isn't over yet. PLEASE please please keep little Elijah in your prayers a little extra tonight. We really need him to be healthy and strong so we can move on. Thank you.

p.s. Sorry if I sound horribly negative. I'm just scared and sad and overwhelmed. We do know things will be ok. It's just a little hard to see that while in the middle of the chaos.

Waiting to Extubate...

The Dr's have decided to wait another day to extubate Elijah. Everything looked good this morning and they turned down his ventilator to almost nothing, but they aren't confident with how he's doing. He's been breathing mostly on his own for the past couple hours but they are concerned with how he's "pulling" and straining for some breaths. They want to give him some more time to get rid of any excess fluids and be sure that his lungs are up for it when they do finally pull the tube.

Right now they are turning up his ventilator and sedating him again so he doesn't squirm so much. It's not what we were hoping for today and we're a bit bummed, but we are definitely willing to wait to reduce the chance of him having to go through re-intubation again. This is what's best for him and that's all that matters right now.

Please keep praying for him, for a good/calm rest of the day and night, and for a successful extubation tomorrow.

Thanks again for all your prayers and support.

Try again

Elijah's xrays looked great this morning, so they are going to try to extubate again today. The xrays looked great the last time they tried, too, so the doctors are being a little extra cautious this time around. We've turned down his vent and are going to just monitor him for a few hours before pulling the tube out. I PRAY that it is the right time! I'd rather have him keep it in for another day or two than have to go through the intubation process again.

He had a very tame night and is being such a good boy today. We had to take him down the hall for a test earlier and he was a trooper. Gotta see that sweet smile soon!!!

We'll update again later, once we see what happens with the extubation. Prayers! Lots of prayers!

Rollercoaster

Yesterday, before we had to re-intubate. :(


This morning, drugged up again..


Sweet boy

We weren't in bed 2 minutes last night before the nurse knocked at our door telling us to come out. I'm sure that's what it's like to hear your phone ring at 2am--you know it can't be good. We ran out to find out that Elijah had had some sort of bronchial spasm and was fighting the respirator, so they had to sedate him and turn up the settings on the vent (which they've since been able to turn back down, thank goodness). No one is sure why it happened because he was fine through the night and hasn't done anything like that since.

We chatted with Dr. G this morning and we are planning to attempt extubating again tomorrow, assuming everything goes as planned today and tonight. Up till yesterday, his oxygen sats were in the low 90s, and although that sounds good, it's actually bad for Eli. His lungs were getting too much oxygen, which was making his heart work harder, which was making everything work harder. Today his sats are in the mid-80s and that is a much better number for him. He really is still doing great. Aside from the weird episode last night, and his collapsed lung, everything is going as planned.

One bit of good news...I believe the chest tubes come out today. We're still waiting to visit with Dr. Moga, but I'd be surprised if he keeps them in any longer.

It is ssooooo very hard to see our little man sedated day after day. :( It breaks my heart. I keep thinking back to our trip to the hospital on Friday morning before surgery and how smiley and happy he was. I am dying to see that pretty smile again! I can't wait to hold my baby!!! I hope last night was the worst we'll feel through this whole ordeal because it sure wasn't good.

Keep the prayers coming....we appreciate it so much!

The tube is back...

We had Elijah off the ventilator for about 2.5 hours before we realized we needed to put him back on it. :( He was breathing extra hard and straining his tummy muscles for each breath, so they did an xray and found that his lungs are still a little wet. Sooooo......the breathing tube is going back in for a while (not sure how long), which means more sedation. We are having a hard time with all of this right now. I JUST WANT MY BABY BACK!!! It's sooo hard not being able to hold him and to see him so doped up and to have that stupid tube back down his poor throat again. Poor little man.

Please pray that his lungs dry out quickly and that they can get him back off the vent very soon.

p.s. It is now a little later in the evening and it has been a rough rough day for us. Eli is all dopey and sedated and that is SO HARD to see after he was so alert this morning. He's a very unhappy guy right now and we may have to sit through another couple days of this. It turns out that part of his lung collapsed when the ventilator was taken out this morning, so that needs to fix itself and he also needs to get a little bit stronger.

Get these tubes out!

We were warned that yesterday would be a tough (if not the toughest) day and it definitely was. Elijah was waking up off and on in a very groggy/drugged state and the day was spent trying to keep him as comfortable as possible. We had a period of time that was a little scary because they couldn't get his blood pressure where they wanted, but eventually they got it under control.
The hardest part was figuring out the right balance of pain medication and muscle relaxers. Obviously he's a baby and can't communicate specifically about what's bothering him so it was a guessing game. When he would wake up he'd wiggle around which would only makes things more uncomfortable for him.
It is definitely NOT a fun time watching your baby cry/cough but no sounds come out (because of the ventilator) and little tears rolls out of his eyes as he looks/squirms around in obvious discomfort.

Even though it was a difficult day, that's the norm after such surgeries and he is still doing great. Last night before bed they gave a steady dose of a drug to help him sleep comfortably through the night as all the other drugs cleared his system (certain drugs affect the lungs and have to be out of the body before extubation).
He had a very good night and is currently snoozing away this morning.
The Dr. just came by and said it was okay to keep weaning him off his ventilator so he'll be able to get rid of that nasty tube in the next few hours. His chest tubes needs to stay in for one more day because of a possible air leak.
Overall he has constantly impressed the Dr's and it's nice to see him being "disconnected." He's off almost all drugs at this point and his catheter is also being taken out. By tomorrow he should have a couple IV's removed (they'll leave the one in his neck) and be on his way to being totally wireless!

We'll get to feed him later and hopefully hold him a little :)

Thanks for all the praying and support, please keep praying for him to continue recovering like a champ.

ps. Elijah's mom is amazing, I think that's helping him recover fast, he wants to be held in those arms!

Draining out

Elijah had another uneventful night and has remained stable. The doctors and nurses all are saying how wonderfully he is doing. The Lasix is finally starting to work better and he is getting rid of the fluids his body has been holding onto for the past 48 hours. That is very good news! Dr. Moga and Dr. Gremmels decided to leave his ventilator in one more day just to be on the safe side, and to "drain" him out a bit more. He also still has some bloody secretions in his lungs, so they want to give that a bit more time to clear out. We were hoping for extubation today, but whatever the doctors think is best for him. They are slowly weaning him off his meds, so he is a bit more alert now. He's still groggy, but is moving around a bit and is opening his eyes. Today will be a bit of a stressful day since he'll be wiggling more and we'll need to keep his arms tied down so he doesn't start yanking on his tubes. Hopefully today will be the worst of it and it will get better from here. He is doing such a great job. What a good little baby boy! We're so proud of him.


Peeking out at us


Chest dressing is off!


Daddy and Eli

He has pleasantly surprised us

Those were the surgeons exact words this morning when he stopped by to see how Elijah was doing. Our little guy had a very tame night and all his numbers (oxygen, blood pressure, heart rate) look great. The only thing he wasn't doing very well this morning was peeing, and that is probably related to his kidney issue, so they are giving him some Lasix to hopefully drain him out. The doctors had told us to be prepared for possible major puffiness, but he's just mildly puffy, as you can see in the pics, so that is good. They are weaning him off the ventilator today and hopefully by tomorrow he can be completely off! He is still in Intensive Care, but once he comes off the vent, and as long as he's still stable, he can step down to recovery on 3rd floor. He's still totally out of it. They need to make sure he doesn't move around much because he might try to yank his tubes/wires out, so he's on muscle relaxants right now.

I have NO DOUBT that he is doing this well because of the HUNDREDS of people we've had praying for him. I really do believe that. Please keep the prayers coming....today and tomorrow are crucial recovery days for our little champ.


Right before we handed him over yesterday. :(


Post-op--a bit puffy, but not too bad


Look at all those machines!

Surgeons are quirky...

...but that's good, because that usually means they're really smart. We just chatted with Dr. Moga (Elijah's surgeon) and all went well. The one collateral that he re-routed was smaller than he would have liked, but the main pulmonary artery is large so that is GOOD news. A few of the other smaller collaterals will probably eventually need more "work," but for now he left them alone. We will keep a very close eye on him these next few days.

Please don't stop the prayers! There is still a lot to get through these next few days and weeks, so we still need them. Since he has only one kidney, his body will have to work a little bit extra hard, so that is one thing of concern right now.

I'm a bit nervous about seeing our sweet little man all doped up and on a ventilator, but.....I just wanna see him! I wish I could hold him, but it will be a few more days till that happens.

THANK YOU for the support! We will keep on updating as we find out more.

Closing Time

Elijah's heart surgery is done and everything went very well, there were no suprises and his chest is being closed right now. We are waiting to talk to the surgeon and then we'll head to the ICU and be able to see our little guy in about an hour and a half.
We'll post some pics and more details later tonight.

Thanks again for all your prayers and support today, it's been a long day but a good day and we are blessed to have so many people standing with us.

ps. Even after little sleep and hours of waiting Megan is still the most beautiful mommy around!

Goin' good

We just got an update from Dr. G and things are going well. All the "work" is done, they are now just waiting to see how the blood starts flowing through his new piping. About 10 more minutes of that and they will officially be done!! He's going to check back in when they're closing up his chest.

So far everything looks great! More details in a bit...

Incision Made

Elijah's been in for about an hour and a half and we just got word that the incision has been made (it takes a while to get him all ready and hooked up). It'll be another 4-5 hrs before we can see him.

The surgeon said it might take a while to find everything because his anatomy is so different than a normal heart. We're praying that he finds what he needs to fast (the more poking he has to do the more swelling and greater chances that the chest will have to be left open) and that he doesn't disturb to much other stuff (there's nerves by the lungs/spine that can be irritated if bumped too much when moving the heart around and cause little problems, such as a hoarse voice).

We'll hear from our cardiologist in a few minutes, and once in the middle of the procedure and then at the end.

Thank you all for your prayers and support.

Into surgery..

Our little Elijah was such a trooper this morning. He hadn't eaten since 2 am (doctor's orders) and didn't cry much at all, even at 8:00 when he should have been starving. What a good baby!

We met with the surgeon this morning and he's a little quirky, but I think he's got things under control. :) I made him promise to take very good care of our baby. He's been in the OR for an hour now, but the incision hasn't been made yet. G-man should be in shortly to update us once the chest is open.

Pre-op & a naked baby

We wanted to get some good naked baby pics before Elijah has a scar on his chest. He has been SUCH a good, happy boy today. He's such a good sport considering all the poking that was done to him at the hospital earlier. Below the pics, Dan wrote an update on how pre-op went today.






Hey everyone, we just got back from Elijah's pre-op appt and all went well (except for the blood drawing and too much poking of my boy and me punching out a nurse, okay that last part didn't happen but almost).

Here are the details we have now (due to tiredness and speedy typing this will not be grammatically correct): he'll go in at 8 tomorrow morning and the actual sugery will take about 2-3 hrs but we won't see him for 5-6 hours due to putting him on a bypass machine so they can stop his heart and drain it to operate on it. That process takes time and they'll have to watch closely as they "restart" his heart afterwards to make sure there are no leaks. He'll be in the icu for 2-3 days and then a recovery room for another 7-11 days for a total hospital stay of 10-14 days. One of the things that may keep him in the hospital an extra few days may be his kidney "issue" (the fact that he has only one). His little body has to process a lot of fluids, especially during and after surgery, so we will just have to monitor that and see how it goes. Dr. G feels confident that they'll be able to close his chest after surgery (infants often have to be kept open due to swelling). During the surgery the main thing they will do is put a straw-like tube where his pulmonary valve should have developed, then they will see if they can "tie off" some of the collaterals that his body grew, to compensate for not having that valve, to the pulmonary artery. There are obvious risks of stroke and infection and other complications but the Dr. said he felt Elijah has a %90+ chance for a successful procedure.

After this surgery he'll have another one in 6 mos to a year during which they will fix the hole in his heart and replace the straw-like tube with a pig or cadaver valve. This valve will work for a few years until he grows out of it and then it will be replaced when he's around 5 yrs old, and hopefully the last step will be putting in an adult sized valve when he's around 15.

Tomorrow is the first step and it's the biggest/most dangerous but we are feeling very confident and faithful. We are so grateful for all the support we have been receiving, it's truly amazing to feel the care and love of so many. God has been good to us and He will continue to carry us through this trial.

Thank you all so much for your prayers and support.

We will continue to update the blog as Elijah progresses through this first operation.

ps. Megan is beautiful and amazing and Elijah Loooves smiling at his mommy!

Lovin' on the baby

I'm having a hard time putting the baby down. As surgery draws near, the greater my need is to snuggle with our little man. I know know know everything is going to be GREAT, but it is still quite difficult for a mommy to envision handing her baby over to two surgeons.

Below are some cute pics from this evening. We were having fun combing Elijah's fluffy hair. He's been in such a good mood this week (quite the change from last week), so these past few evenings have been fun.

Pre-op is tomorrow. Hopefully we'll be home by mid-afternoon to spend a full last evening at home together before the Big Day. Ok, gotta go love on my precious boy.


Do I have the two most gorgeous boys in the world, or what?!


Don't you just want to nibble on that double chin?


Getting hugs from Leo the Lion

p.s. If you haven't already, please check out Sam & Eli's link to the right. Little Elijah Yoder needs some good praying right now.

So thankful!

Elijah weighed 12 lb. 3 oz. at this morning's check-up! No wonder my arms are tired lately. He is now in the 25th percentile for height and weight, up from the 10th percentile at his last check, and the 3rd at the check before that. He has gained this weight ALL ON HIS OWN, which is amazing for a baby who has such a serious heart condition. He honestly is a MIRACLE baby!

I want to express my deep appreciation for everyone who is surrounding us with love and prayer right now. We have such amazing people in our lives and I feel like we have such a protective, peaceful warmth surrounding us right now. We are overwhelmed by the amount of prayer and love that's been given to our little man, and to us.

While looking online for info about Elijah's upcoming surgery, I found Matthew's blog. Matthew was born with the same heart defects as Elijah. He is now 2 years old and is doing extremely well, and is such a cute little man. His story has given us great hope! I've been talking to Matthew's mom, Terri, and it's so nice to be able to talk to someone who has experienced exactly what we are feeling right now. Terri wrote a nice little request for prayers for Elijah on her blog. :)

Also, please keep our dear friends Tim and Katie and their little guys, Samuel and Elijah, in your prayers. Sam and Eli were born very premature and, now 2 months old, little Elijah is having a rough time. He is here at the Mpls Children's Hospital NICU as he tries to get past some tummy issues, while hoping to avoid surgery. It's ironic that Elijah Porta and Elijah Yoder will be at the SAME hospital at the SAME time. I believe that it's not an accident that it's happening this way! You can check out their blog for more detailed info.

Pics and an update

Eli doing his trademark one-eyed peek at Daddy


Smiley baby


Chillin' in the swing


Daddy wearing a sombrero while feeding?!


Totally zonked in the car seat


Elijah meets Suite 7, my awesome girls


Not sure how Eli learned about Hitler at such a tender age. We'll have to have a chat with him.


Snuggling with the mommy


Elijah has been checking out his hand a lot lately

We got a call from Dr. Gremmels on Friday, so we have some more info about Elijah's surgery. It turns out that Elijah's MAPCAs, although the most serious form of Tetralogy, isn't as complicated as a lot of other MAPCAs cases. So surgery in CA isn't at all necessary. The G-man presented Eli's case to the surgeons at Children's and they feel confident that they can do it themselves. We asked about leaving his chest open after the surgery and he said we won't know until the time comes, but most likely NOT. Phew. We were also a bit concerned how his one kidney would hold up during and after surgery because we had heard that heart surgery is particularly hard on the kidneys. He said we'll just have to keep a super close eye on it and all should be fine. We stopped Eli's Lasix on Friday because he's been sooooooo super crabby and G-man suggested that it may be making him dehydrated, as it sometimes will do, which means he may be overly thirsty and therefore overly crabby. He's been off the medication for two days now and you'd never know it. He's still eating like a champ and is as strong as ever. What a strong little guy! He has still been somewhat crabby this weekend (when he's tired), but not as bad as last week. If he continues to eat well these next few days, we'll just leave him off the Lasix till surgery day. Wooohooo! Medicine free!

That's about all we know. We have a doctor's appt on Tuesday just to get him checked out before surgery and then pre-op on Thursday and of course, the Big Day on Friday. We will continue to keep this site posted. Thank you for the support and prayers we've received! We got some GOOD praying done for Elijah in church today (minutes before he pooped through his diaper and onto every piece of clothing he was wearing), and it felt really good (the praying, not the pooping). He is such an amazing little person!

Sleepy, crabby and awaiting surgery

Quick rant: The other night I read through some of our earlier posts from back when I was pregnant and wow...the doctors gave us SOSOOooosooooooooOOOOoo much more to worry about during my pregnancy than was necessary. We came home from every doctor's appointment feeling lower than ever, thinking our baby was going to be born with one eye and seven arms and a half a brain and no fingernails. There was way too much medical speculation that did nothing but bring us down. It was good to know about the heart defect before birth, but everything else they speculated about was ridiculous and heart-wrenching.

We will be posting more often now that surgery is approaching and we'll want to keep you all updated, and also because I'm starting to get a bit anxious about it and need a place to come vent. We also owe some recent pictures! We have to show you how chubby Elijah is! I promise I will do that this weekend. I just came back to work full-time and ever since, my days consist of working, going home to console crying baby (more on that below), sleeping, providing nourishment for baby when I find time....and then starting over again.... Dan is staying home with Eli till next Fall, so that has made being back at work a bit easier, but (sorry Zinpro) it's still not easy. In fact, it is bloody hard. I now have a deep appreciation and respect for all working moms.

Elijah hasn't been taking naps very well lately and when he is sleepy, he is a MAD baby. (Like Mama, he needs his sleep!) So at the end of the day, when I'm ready to snuggle and play, he's ready to scream his head off. Dan does such a good job with him during the day and tries soooo hard to get him to sleep as much as possible, but I think Eli's declining health and lowering oxygen sats are contributing to his sleepiness and there's not much we can do about that except just wait till he's "fixed."

Enough blabbing for now. We'll post pics and an update on surgery stuff this weekend. Dr. G had better call us back today...we've been waiting to hear from him all week!

Surgery soon

We are still waiting to get a few questions answered regarding Elijah's upcoming surgery on the 25th (next Friday, yikes), but here's what we (sort of) know:

The little man weighs 11 lbs now, so that is a very good thing. The bigger the boy, the better recovery will most likely be. Everyone keeps asking us how long recovery will be and we really don't know. It depends on whether or not there are complications during surgery and many other factors that we won't know till the time gets here. From what we've read, a miracle recovery and get-home time would be ~5 days. A more likely scenario would be ~2-3 weeks. As for how long the surgery itself will take, I think I remember hearing approximately 6 hours.

We are hoping to be able to talk with the surgeons before next Friday to get some of our questions answered (apparently they are important people and have other things going on :). We are still assuming the surgery will be done here in Mpls, as opposed to being in CA. Eli's cardiologist promised us that he'd get his info to both surgeons and determine who would be best able to perform this surgery, so I'm pretty sure we would have heard by now if we were traveling to CA.

We are pretty sure that Elijah's chest will need to stay open for a few days post-operation. This is one of the things we'd like to ask the surgeons, but I'm pretty sure this is the case (has to do with swelling). Another question we have is what the success rate for the surgery is. His cardiologist was throwing around mid-80% numbers the last time we talked, so that would be good to know going in. I had a dream last night that the Stanford surgeon, Dr. Hanley, told me he gave Elijah a 70% chance to get through the surgery successfully. Let's hope it is higher than that!

What we do know for sure is that going into this, we have a healthy baby (who will probably weigh 12 lbs by then) and that is going to weigh hugely on his side. That along with all the prayers that people have been graciously sending his way. PLEASE....we ask you all to send more prayers Elijah's way! Pray for NO complications, a completely successful surgery and that we can take him home quickly. THANK YOU SO MUCH!! Your prayers have worked wonders already. I have no doubt that miracles can happen.....

May 25th

Just found out the surgery date. It is set for May 25th and as of now it is in Minneapolis. We will post more details next week.

In the hospital today

Elijah just got out of his cath surgery and everything went well. My mind is a bit jumbled right now after experiencing a scary episode in his room so I am just calming down. We were trying to feed him post-op and he was still a little bit sedated and he kept forgetting to breathe. His oxygen sats dropped down to 10% and weren't coming back up. He started turning blue so we paged his dr back in and he got him breathing in some oxygen so he started remembering to breathe again. He seems to be doing much better and hopefully within 30 minutes should be back to normal and eating from a bottle (he's starving!!).

From what they found during the procedure, he is probably going to need a 2-stage surgery. One of the collaterals that is supplying his lungs with oxygenated blood is shaped in a big twisty S, so it's a bit difficult for the blood to flow freely through that path and that's why his levels have been gradually declining over the past few weeks. The first surgery will create a pathway that makes it much easier for blood to get around in his heart/body. The second surgery would be to fix the hole in his heart. Dr. Gremmels is going to try to consult with the surgeons here at Children's today to see if they feel confident doing the surgery themselves. He is also going to consult with the surgeon at Stanford to see what he thinks. Dr. G believes that the surgeons here will be able to do the surgery themselves, but we will hopefully hear from him later today to know for sure. It looks like Surgery #1 will take place within the next few weeks. Not sure when Surgery #2 will take place. The collaterals they will be doing surgery on are in tricky places in his body (near his spine/in his back) so this is going to be a pretty risky surgery regardless of where he goes. I think I might need sedation myself to be able to get through this. Today has been pretty rough for me and it really wasn't a huge procedure at all. The day started off badly, though, when three nurses poked him about 87 times trying to find a vein for an IV. He SCREAMED his lungs out and I had to leave the room.

We will hopefully get to go home this evening, assuming everything goes ok today. We will keep this site posted as best we can. Our computer at home is being fixed, so unless we're at the hospital, we don't have access to a computer for a few days.

A lil' procedure

We took Elijah in today for a check-up and his oxygen sats were pretty low (high 60s) so we need to bring him back in tomorrow morning for a catheterization procedure. They will go in through a vein in his leg and up to his heart to see how it is functioning. We really won't know specifics till that is done. The MAPCAS that he was diagnosed with (on top of the Tetralogy) is what may be causing issues right now. The surgeons here at Abbott don't do many of these MAPCAS surgeries because it is a very rare condition--they do only maybe 5 per year. Eli's cardiologist knows a surgeon at Stanford who specializes in this area and does many more of these surgeries. So depending on how things look, we may possibly need to travel to CA to get this first surgery done. BUt....again, we won't know till tomorrow. We will try to update then but our computer is not being very cooperative (I'm here typing in the Apple store now, hoping they can fix it for me).

Say some prayers! Thanks!

Oh and Elijah weighed 10 lb. 5 oz. today. Chunky man!