My pretty smile

Elijah wanted me to share his pretty smile with you all. I know, I know....everyone says that it is far too early for a baby to show his emotions through his facial expressions (and that any "smile" is really just gas), but this sure looks like a smile to me!

Oh My Eli!

Daddy burping our handsome man


Elijah can't stop staring at Maurice the Monkey (honestly, he stared at him for like an hour today)


Today Elijah had a check-up with his cardiologist, Dr. Gremmels, who by the way, is a fabulous doctor and who we are very lucky to have found. The G-Man (as Dan calls him) was VERY happy with Eli's progress. His oxygen saturation was at 88%, which is perfect for a baby in his situation. His blood pressure was good, his heart sounded good, his chest xray looked good, and he weighed 6 lbs, 6 oz!!!!! He has gained a pound and a half since birth and almost a pound in the past week or so. His rock star eating habits have paid off. He's just like his mommy--a little piggy who will consume large amounts of food. We are soooooo proud and we were so happy to walk out of the doctor's office feeling good. During pregnancy, every doctor's visit was stressful and worrisome and emotionally painful. Now, things are much different and each visit brings us good, reassuring news. Finally! The G-Man was so impressed with our little man that he doesn't even want to see him back for another month. Initially he wanted to see him every two weeks, so this is very reassuring news. The plan is still to reassess at ~4 months and to do surgery ~4-6 months.

We are currently in quarantine mode and need to keep Eli away from kids and germs, so we apologize for that. Once RSV season is done (in about a month or so), we will be much more able to see people. However, if you'd like to stop by and you aren't sick and don't have children with you, please feel free! I don't get out much and would love to see you all!

St Patty's pics....and a medical update

Here's an update on Elijah's medical situation:

We will be visiting his cardiologist every other week for check-ups and when he's about 4 months old, he will need another angiogram so they can look into his heart and see how it is functioning. This will give us a good idea about when his first surgery will be. Right now they are estimating that the first heart surgery will take place at 4-6 months. Our number one priority is to fatten him up for it...and to keep him as healthy as possible (which unfortunately means keeping him away from kids and the general public for a while). The bigger and healthier he is, the better the surgery will go and the better recovery will be. He has gained almost a pound since his birth. Last Friday he weighed 5 lbs, 12 oz! He has been eating all his food through bottles and has been doing better than anyone thought he could do. He is such a strong guy.

Elijah's one kidney appears to be functioning just fine on its own, so as of now it looks like this will not cause him any medical issues. We will be seeing his urologist at the end of April for a check-up.

Because his little heart is trying so hard to send as much blood as possible to his lungs (and therefore sending too much blood to his lungs), he is still taking a small dose of Lasix. This medication expels fluids from the body. Without it, fluid would build up around his heart and lungs and would make it difficult for him to function. The medication is wonderful because he doesn't seem to be having any trouble doing the things that some heart babies would have a hard time with--breathing, eating and pooping.

Sometimes when more than one anomaly is seen in a baby, the doctors look for an underlying genetic reason to possibly explain everything. Since Elijah was born with a couple anomalies--his heart defect and his missing kidney--a genetic doctor had some tests run on him as soon as he was born to see if maybe there was an underlying cause for these things. We just got those results back this week and everything was perfectly normal. He does not have a genetic disorder or anything wrong with his chromosomes, so these anomalies are just a fluke.

Elijah has some challenges that lie ahead (surgeries, recoveries, etc..) but he is such a perfect, normal little baby. Looking at him, you'd never know he needs some major repairs inside his tiny little body.

Considering the severity of his heart defect and his prematurity, he is doing EXTREMELY well right now. All those prayers that you all have sent us are paying off. God has been so good to us. We are so blessed!

xoxoxxo
M, D & E

Our sweet man

We pulled Elijah's feeding tube out this week. He's been taking his bottles every feeding since Sunday, so we decided we'd had enough wires/tubes sticking out of his face. There was so much gross, mucousy gunk on it when we pulled it out--yuck! So here are some pictures of his sweet little wire-free face!


Chillin' in his vibrating chair.


I had to get a good pic of the growing double chin! Ssoooooooo cute.


This is Elijah when he's zonked...mouth wide open, snoozing away. Oh and notice the airplanes on his shirt. I think he's looking forward to skydiving soon!


The sweetest boy ever.

Pics!

We've updated our shutterfly pictures for everyone to see (link on right). Lots of Baby Elijah pics!

Home again

We are home again and it feels so good. We got home last night after another couple days in the hospital. Elijah still has his feeding tube in his nose because he hasn't been taking the bottle 100% of the time. His cardiologist is comfortable with him using the bottle only 60-70% of the time, so it's good to have the tube as backup when he's too tired to eat. We have to give him his Lasix twice a day and that seems to be working ok so far. We are hoping for a nice long time at home now, with no more issues until his surgery.

I know we say this a lot, but thank you to all of you for the love and gifts and kindness and food and prayers. We are so grateful!

Gotta go hold our cute man. :)

M, D & E

Home away from Home

Well, we're back at the hospital as of last night. On Tuesday and into Wednesday Elijah started acting differently than normal, not feeding as well and breathing very hard. We took him to our pediatrician yesterday in Shakopee and they sent us back to Children's Hospital to get him checked out.
He's not sick (thankfully) but he was experiencing some Congestive Heart Failure. In short, his lungs were actually getting too much blood flow causing him and his heart to have to work harder. As a result of the labored breathing he wasn't able to eat as well and was quite a bit more irritable.
The good news is that this is a common issue that comes up in kids with his condition. To treat it the Dr's have raised his dose of Lasix (which helps the body get rid of excess fluids) and we've already seen a drastic improvement. His last couple feedings have been very good and it seems like our sweet ol Elijah is back to his normal self.
He'll be kept one more night just to make sure that things are back on the right track.

It was a stressful afternoon/evening but we are feeling good today about his progress. Hopefully we'll even be able to take out his feeding tube when we go home tomorrow (which would help him even more since he wouldn't have one nostril essentially plugged).

The little guy defintely likes to keep Ma and Pa on their toes!

Thanks for all your prayers and support, we are truly amazed, blessed and more grateful than we could ever express for all the help we've received. Even the hospital staff comments on what great friends/family we have supporting us. Thank you all so much.

Home at last!

We're soo sooso sosoo happy! We are finally home with Eli! :) We spent yesterday getting our house and baby stuff situated in between feedings and diaper changings. Today we are sleepy since we only got a few hours of sleep, but that is to be expected. I don't even care about the lack of sleep--I'm just so happy to have him here with us. I'm not nearly as terrified as I thought I'd be having him away from the hospital. His color looks good and he's eating like a champ, and those are indicators that he's doing well, considering everything.

Now we will just be taking it one doctor's visit at a time and hoping for the very best--and lots of healthy weight gain. He is such a good little baby. He is so calm and has such a pleasant demeanor. We are so blessed and our little peanut couldn't be any more perfect. Dan is such an amazing dad and it's so fun watching him with Elijah. You can tell that Eli already feels so safe in his daddy's arms.

We have a hungry man here, so I better get going. We have lots of pictures we'd like to share with you all and I plan on uploading them to our shutterfly account in the next couple days (link to this is on the right side of this blog). Thanks again for all of the support. We feel so blessed to have you all as our family and friends.

Love,
Megan, Dan & Elijah

Still here...

We are still at the hospital, probably reeking from wearing the same clothes. I was finally able to find some shampoo yesterday, which is good because the hand soap I was using to wash my hair wasn't getting it very clean. We're pretty sick of hospital life, but I just cannot leave our baby here. We thought about going home one day last week to re-coop but ended up not doing it. This will be our 13th night in the hospital, and I PRAY that it is our last. We've had a few people indicate that we may be able to go home tomorrow, but we aren't holding our breath since we were also told we may have gotten to go home this weekend and we're still here.

Elijah now weighs 5 lb, 2 oz, so he's on his way to growing to be a chubby babe. It's going to be a bit terrifying being home with him...no monitors, no nurses, no doctors...but soooooo great, too! We're anxious to introduce him to his home. We do have to bring a feeding tube home for feedings (an NG tube that goes through his nose and down to his belly), but he has been doing really well with bottle feedings so we're hoping he won't need the feeding tube for much longer. It will be nice not having a zillion wires attached to his little body anymore.

We've had lots of wonderful meals sent to us and visitors and calls and emails and we are so thankful for all of that support. You all have been wonderful and we love you!

xoxoxo
Megan, Dan and Eli

More Pics

Here's some more photos of the cutest baby Ever!

All tests taken yesterday came back normal! Elijah gained an ounce and a half also in the last 24 hours and has been eating bottles all by himself. If he keeps this up we'll be able to get him to his new home soon!