Life with Two because One is the Loneliest Number

"One is the loneliest number that you'll ever find" or so goes the tune.  Life has changed a lot since May 13, 2014.  Luke has already brought immense joy to our lives, including big brother Landon's.  Landon is already eager to show his brother new stuff all the time.  Plus, Landon isn't the lonely one always clamoring for Mommy or Daddy's attention anymore.  Sure there are moments of jealousy, like "Daddy stop holding baby", but things are going well in the newly expanded Walenga household.  Luke has been a much easier baby for obvious reasons, but for also less obvious reasons.  He already goes eight hours at night.  

With that said, I wanted to take this time to try and put into words the deepest satisfaction I have for being a parent. I've been feeling these emotions more and more ever since Luke came.  There is nothing in our lives  more significant (besides our faith) than our relationships with our children.  

I definitely have more "helicopter parent" tendencies than I would have imagined I'd possess before kids.  I think it stems from a few things related to Landon's heart journey, but I want to control so much of what he does because "I know what's best".  

Let's face the facts.  I can't be there for every scraped knee (I hope he gets a few playing hard), nor can I be there when he faces a difficult situation at school or on the playground (amazingly those have already begun which I didn't anticipate).  What I can do is help him build his self-esteem and self-confidence.  This will enable him to fend off negativity in a world full of it.  "In this life we will have trouble, but take heart for I have overcome it."  I noticed the other day, maybe more so than any other time, that when I lavish praise on Landon and push him with repeated encouragement and praise he responds like a champion.  Just like my dad did with me.  Thanks dad if you're reading this.      

This is what God tries to do with us in our lives.  How will we respond if we're not listening on a daily basis?  I'd say it's pretty hard to respond to anything without hearing it.  Am I engaging with God enough so that I can lavish his grace and peace upon my children and my wife?  The answer unfortunately is a resounding no.  

Am I trying harder than I have in a long time?  Yes.  Because this is the area of my life I refuse to fail in.  You can have my job and all my possessions, but you can't take my faith and connection to my family.    

A New Year, A New Walenga

Sorry it's been a while since we've posted.  But with Landon, no news is usually good news.  Landon had another follow up appointment just before the New Year that went great.  His anxiety from the hospital has pretty much gone away at home but at the doctors office doing an xray and echo are always a big challenge since it is nearly impossible to keep him calm and still, which are both very important for those tests.  His xray should that his lungs were clear and the doctor finally OKd him going back to a normal diet from his low fat diet.  We celebrated with donuts on the way home from the doctors office and a big brunch on New Years Day (where Landon ate 2+ pieces of bacon).  He did really well with the low fat diet but it certainly makes things easier on us to not have to count his fat grams every day.

The doctor also approved him to do an overnight pulse ox study which means he would sleep without oxygen at home one night and have his saturations continually monitored throughout that night.  Then the doctor would review the results of the pulse oximeter and let us know if it was ok to pull him off Oxygen completely.  It took a while to actually get the equipment to do the study but as of this week we got the official OK from the doctor to take him off oxygen for good.  Add on the fact that we had a few of his medications cut and his life is pretty much back to normal!  He went back to daycare this week and has loved getting to play with his buddies who I know he missed while he was away for a few months. 

Developmentally he seems to have continued moving forward and not had any delays as a result of the surgery which is a huge blessing.  A lot of kids experience delays and we will take him to the pediatrician soon to make sure he doesn't need any therapies but based on what we've observed he seems to be on par with where he should be.  There is no getting around that fact that he is a 2 year old, so he has gotten very picky about certain things (the blue cup, not the red cup and these pants, not those pants) but it seems to be very normal for his age.  He and I have both had a cold for a few weeks that we can't seem to shake but it's bound to happen at some point in the winter and it hasn't been severe for either one of us. 

We spent Christmas day at home just the 3 of us, which was a nice lazy day other than me doing some cooking and baking and Christmas night my family came in town.  We had my parents, my older sister Jenny and my younger sister Brittany with her husband Josh come out and stay for about a week.  We are very grateful that they could come out since we were not quite ready to travel with Landon yet.  Landon soaked up all the attention as he always does and had a blast playing with his aunts and  uncle and his new toys. 

In other news, we are expecting Baby Boy #2 in May!  We found out a few weeks ago that we are having another boy and are so excited that Landon will have a little brother to play with and cause trouble with!  I am 23 weeks along now and had a fetal echo this week to check this baby's heart.  We already had the big ultrasound at 19 weeks to check everything and the heart looked good then but with Landon's heart defect they wanted to take another look.  Landon's cardiologist, Dr Brames performed the echo and said that everything looks great and he doesn't think I need to have another one!  So all signs point to a healthy baby so far which is very exciting and a big relief!   

We want to thank you again for asking about Landon (especially when we have been slow to update) and for your prayers, meals, cards, etc.  We are so grateful for every act of kindness that our friends, family and even total strangers have offered to us.  Happy New Year!

Excellent Follow-up Appointment

Landon's follow up today went well.  Xray was a battle as always and he was pretty upset for this one, but the xray is much better than last week's!  It's much more clear which shows the fluid starting to dissipate.

 

His saturations have been really good lately too (93 or so on room air and 96 or so on oxygen) so the Dr said we can take him off oxygen during the day although we'll still put him on it at night.  It will make his playtime much more fun though!  No more distance restrictions or tripping over the cord.

 

We are sticking to the low fat diet for a few more weeks and expect he will be taken off of that at his next appt (Dec 30) as long as the xray then still looks good.  So we'll have to make sure to have a Thanksgiving/Christmas meal on New Years Day as long as we get the go ahead.  He also had one dose of one of his twice a day meds (enalopril) removed so we are slowly starting to come off the medicine.

 

Great report and he did really good (aside from the xray) but this time was minimal bothering since no labs/ekg/echo. 

 

The PLE test still has not come back (it is taking forever) but Dr B said he would be shocked if that's positive considering how well Landon is doing.  The other stool sample test we did for a bowel infection came back negative. 

 

He's making great strides (literally and figuratively!) and we are so glad to see where he is now as compared to a week ago. 

Good Followup Appt

Landon was upset quite a bit yesterday and it had us concerned that it might be a sign that fluid was accumulating again but when we took his oxygen saturations last night they were normal so we weren't sure what news we would get at Landon's followup appointment today.

His appointment was with his primary cardiologist here in the Springs.  It was a rough morning with him because we were rushing to try to get out the door on time (not to mention the fact that it was below zero outside when we left the house).  He also had xrays, bloodwork and an echocardiagram in addition to all the waiting time so it was a rough few hours for  our poor little guy.  We got a good report though - his xrays are about the same as when he was discharged which isn't what we had hoped for but at least it's not any worse.  His labs and echo looked good so we are happy with that news.  We didn't make any changes to his meds, low fat diet or oxygen based on the visit today.  We'll go back for another followup in a week.  Hopefully xrays will show some improvement by then and we can start to wean some medication or oxygen or go back to a normal diet. 

We are so grateful to be home and today Landon seemed to be in a little bit better mood than yesterday once we got home.  His cardiologist said it would probably take a few weeks before he gets back to his normal self in terms of feeling safe again and not being so anxious about constantly being poked and prodded.  We're hoping he will feel more emotionally secure a little bit each day and are very happy with the progress he has already made. 

Discharge attempt #2

Got discharged this afternoon and just got home. Here are a few pics of Landon on the way out of the hospital. We have a follow up appointment on Thursday. Will post more details later.

We are glad to be home!!

No change = good news?

Xray continues to show very little change today and since the existing fluid does not seem to be bothering Landon or affecting his vitals, they may send us home today with a follow up and xray in just a few days.

The medical team still needs to discuss with the surgical team and Landons primary cardiologist so we will see if they all agree that discharge is the best decision right now.

Not Much Change

Landon got to sleep in a little bit this morning which was nice.  Gary went to work today but his mom will be here the rest of this week so I'm glad to still have some help with him gone.  The xray today again didn't seem to show a significant difference but his lung's were expanded on yesterday's xray and contracted on today's so that can make a big difference in comparing the two.  As many as xrays as I have seen, they still seem very subjective to me.  Those and echos are something I don't think I'll master interpreting. 

Anyway, so they decided to increase Landon's dosage of his diuretic medication to help him pee off some of that extra fluid but that's the only step they are taking now.  They were also planning to talk to the surgical team and Landon's primary cardiologist in Colorado Springs today but I haven't heard any feedback on that yet.  His IV was removed since it was not working very well which is bittersweet because at least he has his right hand and arm back but if they decide he needs any other IV medication he'll have to get another one.  We're praying that he doesn't.

He decided a nap wasn't going to happen today so we did a lot of walking around this afternoon and it was a relief to give him a little bit longer leash and not have to hover over him.  I still have to follow him with the oxygen tank but since he has the IV out I don't have to worry about him falling and landing on his hands and messing that up.  And having the chest tube out makes that a lot easier too.  He doesn't spend much time in bed during the days anymore! He spends a lot of time in the wagon in his room and out on walks or wagon rides. 

So it still sounds like it will be at least a few more days before we can go home.  I think they wanted to see how this increased lasix dose might help the fluid dissipate and see he ends up.  So tomorrow's xray will be a big one but it feels like that every day.  Continued prayers for improved xrays are what we need right now!