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!

My first real food!

Elijah ate his first non-milk meal tonight--rice cereal! He appeared to enjoy it, as he slurped and spit it all over the place.

We did decide to get him into see an ENT, so his first appointment is next week. Hopefully we can figure out why he is so wheezy and squeaky. Wednesday is his PT appointment and I've been trying sooo hard to get his neck stretched out as much as possible and turned to the side without the flat spot so we can avoid the helmet.

He has shown very positive signs of maturing in the past week or two. We can actually lay him down for a nap and get him to sleep! We do have to soothe him every now and then, but we don't mind....he's actually napping!

Cardiology appt today

We are just getting settled after Eli's doctor's appointment today. Concerning his heart, everything looked GREAT! He had to have an echo done today, which we didn't expect, but the results were good. The "work" done to his heart is functioning perfectly with no surprises. His oxygen sats were at 88%, which is perfect for him. The plan is to get another heart cath done in the near future, but we still aren't sure exactly when that will be. We'll keep bringing him in regularly to get things checked out and Elijah will determine how soon that happens. It could be next month and it could be in October.

A point of concern right now is his breathing. I had mentioned before that he has a bit of squeakiness when he breathes and sometimes it seems like he's working extra hard. The G-man said that his lungs sound perfect, so that wheeziness may be a result of a few different things. It could be that he is showing signs of asthma (yucky) or it could be airway issues caused by intubation/extubation/surgery, and in that case it would get better with time. Whatever it is, if it continues in the next week here, we will need to bring him into an Ear Nose Throat specialist to get things checked out. Yes! Another specialist to add to Elijah's list!

Next Wednesday is his first Physical Therapy visit. We'll hopefully get some insight on how to help out with his plagiocephaly (flat spot) and torticollis (tight neck muscle). We have to go to weekly PT appointments because his flat spot is actually pretty bad. Because he was on his back for so long in the hospital and because he was unable to be on his tummy for 4 weeks post-surgery, his head automatically falls to one spot. If it is bad enough (the PT will determine), he may have to wear a helmet for a few months to help reshape his head. We're hoping we can correct it without that. Dan and I have done our very best these past few weeks to get his little head turned the "other" way so that we can avoid the helmet. We've also been putting him on his tummy quite a bit, but he just doesn't seem to want to lift that big head up too much yet. Most days I feel like I'm his physical therapist instead of his mommy. We work on rolling and tummy time and neck strength and stretching AAaaaaallllllll day long! He brings a few extra challenges, but at the same time he brings so much joy to us that we cannot imagine life without him. Our little miracle man!

Elijah's little buddy

It is 3:30 in the morning and I cannot sleep because our dear friends Tim and Katie are going through so much right now and I can't stop thinking about them. Their twin boys were born 3 months premature in March and they have been living in the hospital ever since. Sam has been "home" (i.e., at the Ronald McDonald House) for a while, but their other little one, Elijah, has been through many struggles and is still in the NICU. I cannot believe the amount of challenges he has had to face, and this most recent challenge is such a huge blow to Tim and Katie. He has been unable to get the proper nutrition (due to many factors) and therefore has fragile bones. They found EIGHT broken bones on his body this week! Poor little guy. On top of that, Chicago is their home (due to being put on bedrest while away from home and pregnancy complications, they haven't been home since Thanksgiving!), and their insurance is unwilling to pay for transport to get their little guy to the NICU there. If they want Elijah home, they would have to pay $10,000 themselves for ambulance transport. PLEASE.....keep these guys in your prayers! It looks like they are stuck here in Minneapolis until Elijah gets better. They are such wonderful people and I just don't understand why they have had to endure so much. If you want to read more, click the "Sam and Eli" link to the right. Does anyone have any ideas about how to get insurance to pay for transport when it's not "necessary"? We need to get these guys home!


As for our little man....I've had a little bit of worry this week. Elijah has had some extra heavy breathing. It sounds like there is a squeaky wheel in his chest a lot of the time. Luckily, we have his cardiology appointment on Thursday so we can get him looked at. I don't know if his little body is still just healing up from surgery or what, but he sleeps sooo much at night. I'm not complaining at all, this is a wonderful thing, but is it normal for a baby to sleep from 5:00 p.m. to 6:30-7:00 a.m. every day? He sleeps that much regardless of how he naps....even if he takes 4 hours worth of naps during the day! What in the world would I do if I had been working this past month? I would have gotten to see my baby on Saturdays and Sundays only. Thank GOD for my wonderful employer. Honestly, what a huge blessing for my family right now. We are so grateful. Elijah needs some extra special lovin' and care right now and I'd be an insane mess if I couldn't see him five days a week.

Back from Iowa

We had a great time in Iowa seeing the Weiss fam. Some were missing this year, but we really enjoyed seeing those who were there. Elijah loved meeting everyone! He especially loved getting so much attention from Emma and Elle. We worked on tummy time a bit while we were there and everyone got to witness him scream his way through that. And that is why you won't believe the pics down below. When we got home today I decided to put him on his tummy for a bit and....HE FELL ASLEEP! I even got him to turn his head to the side that his neck muscles are tight on. Both of my boys are still sleeping as I type (an hour and a half later...amazing!). Iowa must have been what we needed to help with nap time and tummy time!


Sleeping in Great Aunt Cathy's arms...she's so pretty!


View of Lake Okoboji from Julie and Virgil's deck


Chewing on Eli's juicy neck (I can't believe all the stuff that's needed to travel with a little one!)


On the tummy and not screaming?! (Look at our boy's bald head!)






Daddy snoozing, too..

Take me skydiving!

Laying in Daddy's canopy...Eli wants to jump!


Sooooo tired after a day at the dropzone

We took Elijah to the dropzone today and tired him out. Dan made a skydive, but I decided to hold off since our man was getting a bit tired and crabby and we had to get home for bedtime. It has been a year and a half since I've jumped, so I'll admit I've been a little hesitant. BUT...I'm DYING to get up in the sky again! Some people have expressed disappointment in us as parents for wanting to continue to skydive, but it is like being a parent of a cardiac baby....It is something that we could never explain to someone who isn't in our shoes. It is as safe a sport as you want it to be. Yes, accidents happen, but the odds of anything "bad" happening are really very slim. By jumping out of a plane, I don't feel I'm any less of a good mom. In fact, Elijah will have a much happier mom if I continue to jump. It is the most freeing, wonderful feeling in the world. AAaaaaaahhhhhhhhhhhh....can't wait to get up there again! Hopefully next weekend, if the weather cooperates.

Elijah has been doing well this past week. His napping is getting slightly better and I feel like we aren't trying as hard, which takes some pressure off. He is still a great night sleeper and THANK GOD for that. He spent the night at Auntie Lissa's house a few nights ago and did wonderfully, so that is reassuring. We are prepping him for when Dan and I will be gone for three nights in August as we relieve some stress from this past year (in Vegas...wooohooooo!!). It has been quite the year. We've endured more than we ever thought we could in such a short time. But our little Elijah is worth it all. He's such a blessing to us and we love him so much. I thank God for him every day.

We are off to my family reunion tomorrow morning in Okoboji and we're so excited to introduce Eli to the Weiss side of the family. He will love meeting everyone!

Have a safe weekend!!!