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!

Home?

Elijah has been transfered from Intensive Care to Infant Care since he has been so stable. Today he had a CT scan on his head because the doctor was worried about the possibility of his skull bones fusing together too early, but the scan results came back normal. Tomorrow he gets an xray on his chest to check his heart growth inside his chest. He also gets a blood test to test (again) for jaundice since he still looks a bit yellowish. He is also getting an ultrasound on his lower back because he has a little dimple on his lower back that they want to check out. So many things for such a tiny little guy to go through. :(

The good news is....we may get to go home by Friday or Saturday! We discussed the option of leaving his feeding tube in his nose and feeding him through that while at home. We really need to concentrate on fattening him up and if that's how we'll get it done, then we are willing to do that. He gets soooo tired about halfway through each feeding, so we need the feeding tube as assurance that he will get every calorie that he needs. His prematurity and his heart condition are both major factors in his decreased strength right now. Hopefully with time he will get stronger and can feed without a tube in his nose.

Elijah has his own little private room in Infant Care, so they rolled in a chair sleeper for Dan and I to sleep on during the night. The good thing is that we can be right there with him all night and all day, but the bad thing is that the chair sleeper is quite small so we have to stuff ourselves sideways like sardines to both fit. Should be an interesting night!

Off to another feeding attempt...... We will post some new pics tomorrow.

1 week old!

Hello, Mama here finally. I'm finally not wheelchair-ridden and can hobble through the hospital hallways a bit. Elijah is 1 week old today! It feels like we've been here for at least a month...so much has happened in the past week. We've been sleeping here at the hospital every night. Fortunately, now that I'm trying to feed him through the night, they are giving us a parents' sleep room to crash in. We tried leaving one night last weekend when they didn't have a room available (just went to the hotel next door) and I didn't like being so far away from our little guy. That was a pretty hard night for me. We will stay here for as long as they'll let us.

We are basically just waiting for him to start feeding well on his own. Other than that, he is doing amazing and we are so proud of him. I think he can feel all the love that people send to him because he just keeps showing the doctors how strong a baby he is. He is such a good-tempered guy....he doesn't cry much and he likes to sleep a lot and it seems like he's going to be very easy going.

We want to thank everyone for the calls and meals and support. I'm so sorry if I don't personally thank all of you or get back to all of your phone calls. Our days (and nights) really are very busy now that we are feeding him every 3 hours. I know every mom thinks their baby is the cutest, but really....I think our baby really is the cutest! I'm so in love with him.

We have a few minutes to relax, so we're going to go take advantage of that right now. Bless you all!

xoxoxo
Megan, Dan and Elijah

p.s. We heard a rumor today from one of the nurses that his chromosome check came back normal. Don't want to get our hopes up too much until we hear it from the doctor, but YAYYYY!!!!!!!!!!!!!! Regardless of whether or not it's "normal," he is absolutely PERFECT to us and we love him so dang much.

Blessing

The last couple days have been good for Elijah and Ma and Pa. We've received some good news and seen some tubes taken out (we can hold him much easier and more frequently now!). Elijah had a test done on his kidney and everything looks good, the Dr. said that since he's starting with just one kidney his body will adjust and it will do the work of two. If you or I were to lose one it would be a problem, but since he's just starting out he'll be just fine. Elijah has also started to pee and poop a good amount (so no more catheter) and he's slowly being weened onto Momma's milk (as of Friday night).
As of now we are just trying to keep raising his amount of Ma's milk and ween him off of the supplemental IV's. That way he'll have no more things sticking into his little body. The immediate goal is get him to latch on to Mommy (which is challenging for any baby but a little extra for a premature baby).

The little guy is just a trooper, so tough and strong already. During his tests and frequent "stabbings" he just toughs it out. Such an amazing little man! We are as proud as parents can be of our boy.

We're tired but feeling good and hopeful about taking him home within the next week and a half, maybe sooner.

Thanks again for all the support and prayers, we've heard from so many people who are standing with us and it's been very comforting.

ps. When I say we're tired I mean the kind of tired where you're walking down the hall and see a sign that says "Women's Rest Room" and for a few seconds you get really excited because you think it's a room where your wife and maybe you can rest. Yep, I did that.

Pictures

Here's a couple more pictures with Eli and Momma. He's off his respirator now and breathing fine on his own. There's a lot going on with his body, our next goal is to get him eating and then eating from Ma.
Thanks again for all your support, we'll try to get a more detailed update on this site in the next few days.

Hospital

Oh and for those of you who have asked, we are at Abbott Northwestern in Minneapolis until Saturday.

Our Boy

Elijah Daniel Porta

Our boy Elijah was born February 20, at 9:55 am. He weighed 4 lb, 14 oz, and was 18 inches long. Megan did a great job pushing but he just didn't want to come (the umbilical was a little too short) so they had to do a quick C-section (I got booted cause the epideral wasn't working and they had to put her under).

Mom is recovering, it's a painful recovery but she's an amazing woman and is doing well all things considered.

Elijah had some tests run and we got some more specific information about his condition. The full name of his heart defect is Tetralogy of Fallot/Pulmonary Atresia/Mapcas (you can look that up if you want the full details). It's a more rare type of Tetralogy but the good news is that we will be able to bring him home before surgery and have him gain some good weight. He'll have check-ups every two weeks and if they go well he'll have another Angiogram (a procedure that goes into the heart to look at it) at the 4-month mark to see how his heart and arteries have grown. After that test we'll know when surgery will be needed and have an idea as to how many operations will be needed. If things go as good as they possibly can (a slim chance but at least a chance) he might be able to have just one surgery. Most likely though he will still require several surgeries before everything gets repaired. Obviously more surgeries mean more risks so we are hoping for as few as possible.

Thank you all for you prayer and support. Megan should be discharged this Saturday and Elijah will be able to come anywhere between a week and 3 weeks.

Please continue to pray for Momma (for a quick recovery) and the little guy. Elijah could use prayer for the pulmonary arteries to grow, for his kidney to start functioning properely (his right one didn't develop and as yet his left hasn't been working well and allowing him to urinate enough), for good reactions to medications/treatments, and just overall health and happiness.

He's a wonderful, beautiful person...just like his Ma!

ps. We've taken several pictures and will try to have them posted soon.

Baby Now!

Megan started having strong contractions 2:30 this morning, her water broke in the car and she is currently dilated to 5cm.
She's doing amazing, I'm so proud of her!

Right now she's hooked up to some nice medication and will hopefully be able to get some rest before the baby comes, he seems to want out fast though.

Please pray for Mama and baby.

Update

Megan is 36 weeks as of yesterday. Today we had our Monday check-up and heard some more information that wasn't quite what we were hoping for. Two items of concern were seen during the ultrasound, the first being that the right kidney wasn't found by the technician. On two previous tests the kidney was seen so the Dr told us that it could be hidden/pushed down by the liver (which is what we're hoping for), or the other option is that it has shrunk and/or failed to develop properly. The human body can function just fine with one kidney but we'd obviously prefer that that isn't the case for Jr since this could be another indication of a genetic disorder, in addition to his small size (and despite our two rounds of genetic testing).
The second issue is blood flow in the umbilical cord. The test today showed that there's too much blood pressure in the umbilical cord. Normally when this happens the baby is delivered early but in our case the Dr wants to leave Baby Porta in so he can get as big as possible and be ready for surgery once he comes out. They'll watch the blood flow/pressure carefully to make sure it doesn't change much more (in which case it'll be safer to take him out right away).
Right now they are hoping for Megan to make it to 39 weeks (March 11th) and induce labor then if it hasn't already happened. They'll induce labor because his lungs will be fully developed then and they'll be able to pick the time more accurately and have the proper staff on hand (ie. cardiologist, surgeons, etc).
We are feeling tired and overwhelmed, this has been quite the journey for us. All of the issues we've encountered to date will literally cause the little baby to struggle for his life once he's born, so please pray for the little guy and these latest concerns and pray for Mama Megan and grace and peace.
Thank you all so much for you support during this time, we'll keep you updated as we near the big day.

ps. Megan is the most beautiful pregnant woman Ever!

Hair

Our baby is already taking after his dad. As you can see, Dan acquired some "winter growth" this year, and now it looks like Baby Porta has some winter growth as well. You can't see it very well, but the white fuzzy stuff is the baby's hair. He needs a brush!

We met with the baby's cardiologist yesterday and he took another look at the heart via ultrasound. He stuck with the same diagnosis as before--Tetralogy of Fallot with Pulmonary Atresia. When the first surgery will take place depends a lot on how big and healthy he is when he's born.

I got hooked up to the monitors again at yesterday's visit and witnessed another scary dip in the heart rate. This time it dipped way down to 60 beats per minute. It seems to be dipping lower and lower every time it happens. Needless to say, it scared the crap out of me and I wasn't very patient with the nurse and doctor when they didn't seem worried at all. I guess they have the medical degrees so I should trust what they say, but instinct tells me there's just something not quite right. As long as he continues to do well on all of his other tests (which he does), and continues to move around in my belly (which he does), then things are supposedly stable. I asked for a third visit from a nurse this week for peace of mind, so luckily the dr granted me that. On Monday we get another growth check, so we'll have a good idea how well he has developed in the past 3 weeks. I'm praying so hard for a 5-lb baby on Monday's check. If he's much less than that, it's possible that we will be delivering shortly....like, within the next week or so.

What a foxy babe....