New Routines

Today was an eventful/stressful/weird day for the Porta clan. It was Megan's first day back at work and the two boys had to find a way to survive at home alone. Luckily Elijah took some good naps and made the day easy for dad. In the afternoon we all took a trip to see the Orthotist and Elijah got to try on his helmet for the first time. He did not like it...much like an adult salmon swimming upstream for miles just to give birth, only to reach the final jump and land into a grizzly bear's mouth...basically, lots of screaming and back arching. After a few tries and a short nap (we were there awhile) the helmet fit good enough for Ma and Pa to practice putting it on and taking it off.
Tomorrow is Day 1 and he'll gradually begin to wear the helmet for the next 5 days until he is wearing 23 hours a day!
Going into the appointment the plan was to throw the helmet out the window of the car while driving home (Megan's idea) buuuut he looks so danged cute in that little helmet that we decided to keep it...and the fact that it will help make his noggin more evenly shaped is icing on the cake.
This is a minor glitch in the face of his other difficulties, but in the long run it will be the best thing for him....especially when he's wearing a football helmet and obliterating quarterbacks like his dad used to....or at least used to dream of.

We promised a picture and we'll post some of him in the helmet tomorrow. These pictures are of the helmet and casting of what his head will look like after he's done wearing it (the blue part is the part that needs to be reshaped and as you can see is quite big and why we decided to not throw the helmet out the window of the car).

ps. Megan is the hottest Mama EVER!

Out and about, and a heart update

I'll get to the heart update but first we have some cute pics to share from our fun family road trip we took this weekend. We got in the car and took a spontaneous trip to Duluth and then to Stillwater. Elijah was such a good baby. He slept very well in the hotel rooms and he loved all the time we spent outdoors.


Our first stop--Duluth


We walked along this path by the river in Stillwater about 50 times. Elijah loves his stroller rides.


Look at those big, pretty eyes. He has longer lashes than I do!


Checking out the sports section after his breakfast bottle.

Elijah had a cardiology appointment on Friday and it went well. His oxygen sats ran right around 90%, which is just a touch high for him and may indicate too much bloodflow to his lungs. He needs to get another heart cath to see exactly how things are working since surgery, so we scheduled that for October 3rd. Dr. Gremmels will go in through a vein in his leg and up into his heart to get a good look. The last two heart caths Elijah had were merely to take pictures and get an idea of how blood was flowing, so they were pretty simple procedures. This one will probably entail either a widening or tying off of an artery, depending on what the doctor finds. (Dr. Megan Porta here believes that there will need to be a coiling/tying off of an artery.) Because of this, it's a more complicated and time-consuming procedure than the last two and he'll have to be put on anesthesia and may even need to stay overnight. This cath will also give us a much better idea about when his next open heart surgery will be. Dr. G's guess was that it will be somewhere around a year from now. I don't like adding drama when describing what Elijah goes through, so I apologize for the following. The last heart cath he got was not fun for any of us. Elijah had breathing issues (i.e., forgetting to breathe) after the procedure; the nurses poked him all over his little body as they tried (and failed) to find a vein for an IV and made Mommy want to punch each one of them, five nurses and ten tries later; his oxygen sats dropped into a low, scary range for a few hours post-surgery; the nurses in the Short Stay wing must be the lowest on the food chain because they were not very nice, knowledgeable and/or attentive. I'm praying this time will be much more smooth.

Another thing Dr. G mentioned on Friday was that Elijah's heart is enlarged due to it working extra hard. It will be good to get the total repair done next year so his heart doesn't have to work quite so hard anymore. We also increased his Lasix dose a bit, since he's gained 4 lbs since his last visit.

Tomorrow Elijah gets his new helmet! He's going to look so cute. We'll get some pics posted soon so you can see his cool, crazy colored design.

Thanks for checking in on us. As always, we appreciate the support!

Chubby thighs

I knew Elijah's thighs were getting chunkier, but I had no idea he would weigh 16-1/2 lbs at his 6-month check-up. It's no wonder my arms and shoulders have been hurting so much lately. He is now in the 50th percentile for height and weight! He has always been around the 5th percentile, so this is a dramatic jump up the charts for him. This Friday is his big cardiology appt, so we'll hopefully have more heart news after that visit.

Some exciting news--Elijah rolled over for the first time yesterday! Dan and I were both watching him play on his tummy, which he has been tolerating a bit more lately, and plop...over he went onto his back. We both started cheering and clapping and Eli didn't know what to think of all the commotion. He's such a sweet little pumpkin.


Snoozing in my arms...look at the chub on that thigh! Love it!

Helmet

We just got back from Elijah's appointment with the orthotist, and he does indeed need to wear a helmet for his plagiocephaly. Based on the measurements that were taken, he falls within the Moderate range for needing orthotic help. The orthotist strongly suggested that we do it and I wasn't about to argue. They took a plaster mold of his head today and he didn't like that so much. In fact, I've never seen him cry so hard before. He cried so hard that he threw up green beans all over the doctor! We'll head back on September 10th to get the helmet fitted, which will be custom made based on his molds taken today. He will need to wear it 23 hours per day for 4-5 months. That sounds like a long time, but I'm sure he'll get used to it quickly, as will we. We even got to pick out the design that will go on the helmet. I figured we may as well go all out and get the craziest design they had. The design is called "Tornado" and has multi-colored swirls. The doctor said, "Oh! No one has ever chosen that design before!" Then I guess that makes Elijah pretty cool, huh? This isn't exactly what we were hoping for, but we most definitely want the best for our baby and with all that he's been through and has yet to go through, it is the least of our concerns. He'll be the cutest little helmethead ever!

Gotta go wash all the dried plaster out of his double chins now...

6 Months Old

Today Elijah is 6 months old! Time is so strange. It's hard to believe our baby is 6 months old already, yet it feels like we've been through soooo much in that time and that February 20th was eons ago. We are so proud of our little man. He's been through a lot and he is such an amazing boy.

Update on medical: I'll be heading back to work on September 10th, so it is my mission to get Elijah as far along as possible in gross motor development before he goes to daycare. He has finally started to lift his head off the floor, but only for a few seconds at a time. We'll take that! It's progress. He still isn't rolling over, but he is close. His sitting is getting much better (with support from us) and his head doesn't bobble around hardly at all anymore. We have an appointment with an orthotist to get a consultation on the plagiocephaly. I'm anxious to get the helmet on him (so we can get it off!) if that's the route we have to go. Next week is his 6-mo. check, and the following week is his cardiology check, and in between there are physical therapy appointments and lots of physical therapy with Mommy and Daddy at home. He's still pretty squeaky when he breathes, but who knows where that is coming from (all these specialists don't!).


Look! Head is off the ground!


Tumbling action shot, on the way down from a successful push-up


Sitting up with Daddy's help

1st percentile??

We had another PT visit today and Elijah was MAD. He was a tired boy and screamed through the entire thing, so not much progress was made. His PT gave me a printed assessment of where she thinks Elijah is at developmentally. He is right on schedule with cognitive and fine motor skills, but is in less than the 1st percentile for gross motor skills (neck strength, arm strength, rolling over, pushing himself up, etc...). I knew his surgery had caused him to be behind, but I had no idea he was this far behind. We have been working with him SO HARD every single day. It is a constant, tiring job, so it's frustrating to know that he still has such a long way to go. His surgery and recovery came at a time when it was really important for him to be on his belly, about the 3-month mark. Oh well, we will keep working and eventually we'll get him caught up! Soon here I have to go back to work, so I'm hoping we can do some major catching up before then so we won't have to expect our daycare provider to do all this work for us.

His flat spot is better, but still flat. Depending on what Eli's pediatrician says next week, we may be heading to the plastic surgeon to get fitted for a helmet.

Elijah has been so aware and alert lately. He does something new every single day. Yesterday he figured out how to blow peas out of his mouth and spit them all over Mommy. Today he starting saying, "Bob," over and over. Hmmmm....I wonder who Bob is? The last friend he couldn't stop talking about was, "Aboo." It's so fun to see him grow so quickly and to see what each new day brings. He's such an amazing little baby.

Giggling man

We got Elijah's sweet little giggle on video tonight. He has such a cute squeal. You have to listen for it through the grunting..

Back with our man

Here's a pic of our naked little man right before we left for vacation. We got him all cleaned up for Auntie Lissa.



We had an amazing time in Vegas! We ate great food, went on some fun rides, won some money gambling and had a great time meeting friends. We had a difficult time the first little while we were there because we really missed Elijah (mostly me, I was really crabby), but once we relaxed by the pool and realized this was VACATION, it got much better. Some highlights: rides at Stratosphere, sushi at RA, dinner at FIX (excellent prime rib), dancing at Light, meeting our "heart" friends Mike, Terri and Matthew for dinner, staying at Bellagio and enjoying their beautiful fountains and pools, winning $400+ gambling (for low-stakes people like us, this is huge!) and most importantly, enjoying some alone husband-wife time. Here are some pics.....


View of one of Bellagio's amazing pools


Dan and me under archway between the pools


Daytime fountain view from our room


Nighttime fountain view from room

Vegas!

I have a bit of Mommy guilt and angst about leaving our boy for a couple days, but I have to say that it has been a trying year and Dan and I are very excited about our upcoming trip. We are going to relax in the pool (in the very hot Vegas sun), eat some good food and take in the busy Las Vegas atmosphere (and also meet fellow heart parents Terri and Mike!). We fly in late Thursday and get home Sunday afternoon, so we will only have two full days away from the cutest baby on the planet. He will be in excellent hands. My sister is gracious enough to watch him, so he'll be having a great time at Auntie Lissa's house.

At today's physical therapy visit, Elijah's PT suggested looking into getting him fit for a plagiocephaly helmet. We were really hoping to take care of his giant flat spot without having to go that route. We've been doing everything in our power to get him lying on the other side of his head. I think we'll wait till his 6-mo. check, which is coming up soon, and see what his pediatrician thinks. I know that some parents say no to the helmet and attempt correction themselves, but honestly, if it's best for our man to get it, then that's what we'll do. It's definitely not the end of the world and things could be much much worse! If he does get it, it sounds like he'd have to wear it for ~3-4 months.

Elijah is still squeaky and wheezy, but I think it might be progressively getting better. It's hard to say, though, because I'm around him constantly. We have another check-up with his cardiologist in a few weeks so I'll feel good once that gets here and we can get him looked over pretty thoroughly. His napping has been AMAZING and his neck is slowly but surely getting stronger. We work so hard with him every day so he can "catch up." We're so proud of all the hard work he's done lately. He's awesome.

Ok, well we have to get ready for our trip in between poopy diapers, applesauce and physical therapy. I CAN'T BELIEVE WE'RE ACTUALLY GOING ON A TRIP!

Chunky Monkey

I don't mean to detract from the news on Baby Isaac (see previous post...he's doing great!), but these pics are just too cute not to post. Thanks, suite7 girls, for the shirt. Elijah is a BV Beaver, too!

Good news about Baby Isaac!

Baby Isaac had his heart surgery last night and is in the Stanford ICU doing well. Yaayy! I'm so glad they were finally able to get him in for surgery so he and his family could start recovering and moving forward. Kathy posted post-op pics of him on their website and he looks great!

Yay Baby Isaac, way to go...

Random stuff

Our little bobblehead, sitting in his chair...



We went outside to grill the other night and I said, "Uhhh....move slowly away from the wall and don't freak out.." (even though I was the only one freaking out.) A bat! I've never seen a bat around our house before!


Soooo Dan killed it. Sorry you little baby bat....(and sorry to all of you hurt by this, but seriously, it's a BAT!)



Elijah was a crabby guy tonight. I don't think he slept very well last night, so he was a little extra tired. He was unwilling to smile for us, but we got some good pics of his juicy double chin/neck...




And finally, we've uploaded video to youtube that we've had since Elijah was home from the hospital back in March. Here are some of our (many) faves. I can't believe how little our man was just a few short months ago. What a little peanut! If you haven't had the pleasure of hearing his trademark Roaring, you can hear it now!

Bridge catastrophe, a postponed surgery & an appendectomy

We luckily were not near Mpls when the bridge collapsed last night, but we're sooo sad about this. It's tragic. As far as we know, all of our friends and families are safe. We've had a few friends tell us that they had driven over the bridge within an hour of the collapse. That hits way too close to home.

Baby Isaac's surgery was postponed yesterday, so hopefully they can fit him in today. Dr. Hanley had an emergency surgery in the ICU to tend to, so that's why Isaac got bumped.

My sweet little niece Emma had her appendix removed last night. I'm so glad they caught it before it ruptured. Thankfully she is doing well today and doesn't have a fever anymore and is expected to go home by 11:00 this morning. Get well, sweet little girl! We'll see you soon!

I'm hugging my boys a little extra tight today.

Prayers for Baby Isaac

Hey everyone, I'd like to ask you all to send up some prayers for a fellow heart baby. This is Baby Isaac. He's at Stanford right now, awaiting heart surgery tomorrow (Wednesday). He has a lot of the same heart troubles that Elijah has. He's such a sweet little guy and his parents are very sweet, too.....and all of them could use as many prayers as possible. Thank you!!

p.s. Some great news! Tim and Katie are able to fly their little Elijah home to Chicago on Thursday of this week. FINALLY medical assistance has agreed to pay for transport. Yay!! I'm so very happy for them.

We are home!

Our man is amazing. We were at the hospital for a total of only 5 hours today, which is a record for us. We thought we'd have to spend the night, but he was doing so well after surgery (and surgery went so quickly) that there was really no reason to keep him there. He did throw up a bit before we left, but we attributed that to having a bunch of air in his belly from the surgery and then putting food on top of that. Right now he's sleeping soundly in his bed and I think I've checked on him 10 times. I will be a bit extra cautious tonight since he had anesthesia today. From here, I guess we'll check back in with his cardiologist to see what can possibly be causing all of that wheezing and squeaking. Hopefully it's nothing serious and something he will eventually grow out of. Here are some pics just before he was taken into surgery. Thankfully Dan kept my scary head out of the pics. :)


Wearing his big boy surgery outfit--nice yellow booties!


We had to turn down the lights because he was getting sooo sleepy

GOOD NEWS

That was quick....Dr. Sidman came in to tell us that Elijah's airway looks PERFECT! No problems, not even cysts. YAYYYAyyyyy!!!!!

That means that his wheezing and squeaking is coming from his heart or lungs, so we may have to look into that further. But in the meantime, we are VERY happy about this news.

Thank you God! Phew...

in surgery

The anesthesiologist just took Elijah into surgery. Once they are able to find his veins (it's usually pretty hard to find one on him) for an IV, the surgery should only take about 45 minutes. If things go well, a ventilator will not even be necessary, which would be great.

We are praying for something simple!!

Sleepy boy

We took Elijah to get his pre-op physical today and there were no surprises. We're all set for surgery tomorrow at 2:30. We got home from the appt today and he crashed in my arms. I guess he was tired from all the flirting he was doing with the nurses and doctors.


Eating the fingers, of course


Oohhhh....fingers are slipping out..

Adding to the list....

We took Eli in for his ENT appointment today and came out with a lot worse news than we had expected. Dr. Sidman, who is another AMAZING doctor--we really have been blessed with the absolute best drs, stuck a camera down his little throat and determined that there is something constricting his upper airway passage. He couldn't get down far enough to see exactly what it was, so our little man has to go in for surgery on Friday so they can determine what's causing the constriction. Dr. S thinks it could be one of two things. It could be that surgery/intubation/extubation has caused cysts to form, in which case they'd just have to pop the cysts and that would be that. We are hoping and praying for this option. Or it could be that Elijah was born with yet another birth defect where his airway was not formed correctly, in which case they'd need to reconstruct the airway. This would be a pretty signifant surgery and would possibly require Eli to have a tracheotomy for a few months. This would be absolutely poopy, so I'm asking God as I type that this not be required. We'll get this figured out and get another obstacle behind us. I'm soooo glad that I pushed for getting into the ENT. The G-man suggested it at our last visit, but wasn't adamant about it, so I'm glad I called and got him in right away. His wheezing has just been progressively getting worse, so I knew something was up. I was just hoping it was something simple, which it could still be. I just hate that we have to go back to the dreaded hospital.

We'll be in the hospital overnight Friday night since Elijah will need anesthesia and they'll want to keep an eye on him post-op. We should be home Saturday, barring no complications, and hopefully with good news. Please say some prayers. We are really hoping this is not going to turn out to be a big deal.

Some cute pics to lighten the mood...


Sitting up like a big boy in his new Bumbo chair


Smooches from Mommy. I think he gets a thousand of these per day.


Lately when we feed Elijah, he completely sprawls out on us. He stretches his arms and legs and leans back and just relaxes while gobbling down his bottle. Look at those chunky thighs!

Mommy the PT

Elijah had his PT visit today and it went well. His plagiocephaly is borderline for wearing a helmet. We need to get his head reshaped within the next few weeks or he'll have to get fitted for a helmet by a plastic surgeon. In order to do the reshaping, we need to be diligent about keeping him off his back as much as possible. That's going to be a bit of a challenge when he 1) hates tummy time (unless he's napping), 2) has to sleep on his back at night (SIDS prevention) and 3) cannot sit up on his own. This means that Mommy and Daddy have to be constantly holding, supporting or repositioning him. She stressed the importance of LOTS of tummy time, which we have been doing, so we'll just continue with that. He is pretty far behind in his gross motor skills, thanks to hospital time and recovery post-surgery, but with some hard work in the next month or so, I think we will be able to catch up. We are also going to get him a Bumbo chair, which helps to hold him in a sitting position. It's funny to watch him in that because his head just bobbles around. :)

It's going to take some hard work, but we can do it!