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!

2 months old!

Elijah is two months old today and we had his 2-mo. doctor's check this morning (including stinky vaccinations). He now weighs 9 lbs. 6 oz.!! Dr. Snook was in total disbelief! He's such a piggy little man, eating all the time and not letting Mommy and Daddy rest much. His constant feedings are starting to take a toll on us. We are more sleep deprived than ever, but of course we are...what did we expect?! I'll stop whining. Back to Eli... his height and weight are now in the 10th percentile, up from being in the 3rd percentile at his last visit. He's growing so well. I think all of his doctors are really just stunned.

We may have to increase his Lasix dose again soon since he's growing so fast (since Lasix doses are given according to weight), but that's to be expected. We see his cardiologist again on May 1st, so he'll probably get another chest xray then to make sure everything inside is still functioning ok. We also may have a better idea at that visit about when his upcoming angiogram will be (which will help determine when his first surgery will be).

What a good, sweet little chubby man we have. We will post more pics soon!

chunkster

Sleeping in Grandpa's arms


Snoozing on Grandma's shoulder

As of last Monday, Elijah weighed a whopping 8 lbs. 1 oz.! The nurse who weighed him said he basically couldn't be gaining more weight than he is. He's gaining about an ounce and a half a day, and that is about as good as you can get.

Eli had a fun visit with Grandpa and Grandma Weiss when they came to visit this week. He loooooved Grandpa's arms and chatted with him a lot about the Cleveland Indians. We were so happy to have them here for a few days and we were sad to see them go.

Growing Boy

Elijah had a check-up with his pediatrician today and it was another positive visit. We couldn't believe it when we saw that the scale said 7 lbs, 6 oz! Yes, he has gained a pound in just 10 days! Dr. Snook could hardly believe her eyes and was so proud of his progress. Everything else looked great, too. Eli's blood oxygen saturation was at ~85%, which is well within the normal range for him. Our little peanut is doing so incredibly well. Here are a few pics that we took after this morning's bath. The fuzzy hair is so funny!

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....

34 weeks!

We have made it to 34 weeks and that is a huge milestone...yeehhhaaaaawww! We have also had a few more visits to the hospital in the past week. During one of our biophysicals last week, the baby's heart rate dropped pretty low and the baseline heartrate was quite a bit lower than it usually is, so the nurse had me go in for further monitoring. The doctors seemed somewhat comfortable with everything, so sent us home. Three days later, I went almost an entire afternoon/evening feeling hardly any movements so I called the hospital and once again they had me come in to get hooked up to the monitors. Same story and now we're back home.

I've been hooked up to many many many monitors over the past few months, and Baby's heart rate has never dropped below 130 beats per minute, so my gut tells me that falling down to 120 and even at one point 90, isn't normal. This is probably another indication that the bloodflow isn't ideal for the baby. I have a feeling that the end (birth) is very near. We have another growth check next week, so I'm guessing we'll get a much better idea on the timeline at that visit. We've been praying for him to be 5 lbs at his 35-week check. We also have our second appointment with the cardiologist this week, so hopefully we'll find out the details about the heart defect and the upcoming surgeries.

We have gotten so much support from our friends and families over the past 5 weeks. It's overwhelming the amount of praying that has been done for our little one....makes me teary thinking about it. We've also had so many meals brought to us and that has been such a huge help during this bed-ridden time. Thank you to all of you who have helped to make this time easier for us. We love you!

1/29 dr visit

Our little man passed his biophysical profile (again)....this time in about 3 minutes. He was breathing and moving around like crazy the second we saw him on the ultrasound monitor. Like last week, the blood flow in the umbilical cord was strained a bit, but still (barely) within the normal range. Baby Porta seems to be a happy, healthy baby, so we'll keep him where he is for now.

We also got some really good views of his face and he definitely has his daddy's sweet little lips. Ssoooo sweet...

Baby, baby, baby....

It HAS to happen soon...there has to be a time when we leave the doctor's office with good news. Right?

The baby is not growing as much as he should be at this point. He is weeks behind in growth, especially in the mid-section region, which they say is the first place to have delays when there is a growth-related issue. They did a test yesterday to see what the bloodflow looked like in the umbilical cord and it seemed to be a bit strained. This probably means that there is a problem with the placenta and that the baby hasn't been getting the blood he needs to grow sufficiently. The doctor thought that maybe the same defect that caused his heart to be formed incorrectly could be the same defect that is causing this. It's hard to say, though.

We have to continue to monitor the baby twice a week until he is born. If there is evidence of his movements or breathing decreasing in frequency, it is possible that he would be better off outside of my tummy. And....with his delicate little heart condition, being outside my tummy right now is not a good thing. He only weighs 3 lbs, 6 oz right now. That is too tiny for heart surgery. But, if he continues to show signs that he's not getting enough blood inside the uterus, then we'll have to take that risk.

The good thing is that he continues to pass every test with flying colors! He shows off his breathing and twisting and kicking every time we peek at him and that's a very good sign that he's still thriving in there.

Hospital Food

I think I'm realizing that my body just doesn't like pregnancy. Last week I was admitted to the hospital because of the frequency of contractions I was having. The medication they had put me on previously wasn't working, so while in the hospital they put me on a different medication called Nifedipine. It's actually a medication used to lower blood pressure, but also helps to relax the blood vessels surrounding the uterus, hence slowing contractions. That medication worked much better for me and gave me fewer side effecs, so they sent me home after a couple nights in the hospital. I'm back at home on bedrest for the remainder of the time, now getting only about 2-5 contractions per hour. Being confined to my bed doesn't seem so bad now after being in the hospital for a few days.

While we were there, they did an ultrasound to check on the baby and found that his stomach is about 3-4 weeks behind in growth. The rest of his body and his brain are all right on schedule, but for some reason his little tummy area is quite small. They were concerned that this might indicate a blood flow problem to the baby, so he has to get two biophysicals per week. For these, they look at the baby via ultrasound and he is tested on five different things (muscle tone, breathing, fluid, movement and heart rate). If he passes all the "tests," then most likely blood flow is not an issue. So far he has aced all of his tests, so there's no reason to think he's not getting enough blood. We will just keep an eye on things and hope that his tummy is just a slow grower.

I'm at 31 weeks now, so we are praying for at least 6 more weeks of pregnancy. These past two weeks have actually gone by surprisingly fast. I can't believe it's the middle of January already. Here's hoping the rest of the pregnancy is smooth and quick and that I won't need to post here again until the baby is born!

My Bed

Good news: The results from our second amnio came back and they were good!!

Not-so-great news: I've had some contractions these past few weeks, which has turned into very frequent and painful contractions in the past few days. The doctor tested me for a protein that exists in women who could be going into labor soon and I tested positive. Soooo.....to prevent that, because labor would be very very bad thing at this point, I'm taking a medication called Terbutaline to minimize the contractions and I'm also on bedrest. For now. They will re-evaluate me at each doctor's visit to see if I need to continue with the bedrest, and my next appointment is Jan 10th.

Until then, my husband is my nurse. :( I feel so bad that he has to do extra work for me, but this is what our baby needs. He cannot come out yet!!!

I'm off to crochet my second scarf and watch Judge Judy....