Thank you for praying for Nate’s heart cath! Hospital stays are never fun, but this little guy did great! We are so thankful for prayers answered because the nurses got Nate’s IV in in one try!! That is a true miracle!
We were a bit anxious because his heart pressures had only gone down slightly. But after discussion, the surgeon/team has decided to move forward with Nate’s heart surgery! Surgery was scheduled for this week, but lil Nate caught a cold and now surgery is postponed for a couple weeks. Please pray for continued healing for his runny nose and cough and patience as we wait.
We’d like to share a prayer request with you all for our family – this coming week, we will be back at the hospital for Nate to get another heart catheterization procedure. This is where he undergoes anesthesia and they put a camera into his heart to take pictures of measurements of what is going on. It’s a relatively minor procedure and we’ve gone through it a couple times already, but if you could please pray:
1. For a smooth procedure and recovery
2. Nate’s lung pressures to have decreased (this is why we have been postponing heart surgery).
3. For extremely good health for our whole family (usually before surgery, there are pre-op labs and if there’s even a hint of a virus or anything in the blood, they won’t proceed)
4. For Nate to have a good hospital stay, and also that the nurses will only need to poke him ONCE to find an IV. The IV is always the most traumatic for him and they have to poke him a lot. So please pray they get it the first time.
5. For strength emotionally, mentally, and physically for Joe and I during our hospital stay
Earned some Ms. Rachel after draining his ear for ear wax
It’s 12 days out from Nate’s heart cath and wouldn’t you know it, we find ourselves at Urgent Care today to treat a double ear infection. 🙈🙉🙊
Thankful that we didn’t end up in an ER, and we caught it pretty early so he didn’t have a fever and has just been pretty fussy. So far, this has been most “successful” emergency trip to a medical facility getting diagnosed, given meds, and in and out in about one hour! Thank you God for watching over us!
Please pray for full healing by next week and continued protection before our hospital stay next week!
Our family had such a great summer! Nate has become a little toddler and while super tiring for us, we also love our little firecracker!
Nate still keeps up with PT and feeding therapy (which he loves his teachers). We’ve found out that his favorite part of therapy is watching other kids 😝. He’s now a mobile little human being and has gotten to explore a little of the world around him (quick trips to the aquarium, duck park, pet store, and oc zoo!). We even did a small trip to pretend city’s baby morning! We’ve also had mini playdates with friends (missing pics with with the Ker family) and little guy just keeps running around like he’s the busiest busy body in the world. He’s also 100% toddler entering the screaming phase of his life, throwing anything and everything (our house is a disaster), being dramatic, fighting sleep (totally a night owl) and all things that drive parents nuts. But we still love him.
Also this summer, we are thankful we only landed in the hospital once for a fever and only stayed for a couple hours in the ER. He had his second ambulance ride as part of his hospital stay. Labs came back negative for all major viruses so we think it was a small virus he caught. It was a rough trip for everyone so we’re just thankful he’s better now. (And thankful God has provided good health insurance). The reason we still remain cautious about close contact, is to prevent hospital stays. After heart surgery, Nate immune system should be stronger and this will be something we won’t need to worry about as much.
As we wrap up summer, we will start slowing down and prepping for a heart cath at the end of the month. We are praying that the findings will show his lung pressure have decreased as a result of time and new meds we started. If it has decreased, we will be looking at open heart surgery soonafter. But as always, all these medical plans are never set in stone and we just wait for Nate to tell us that he’s ready.
I’ll prob post an update closer to his cath… Until then, happy September!
ZOO!!!!! TIME!!!!! We’re figuring out how to balance showing Nate the world and keeping him safe. Our main goal right now is to keep Nate from the sharing of germs from other kids. But we did get approval to do some small local trips! So in the spirit of safe adventuring, we ventured to our favorite OC ZOO!
Yes Nate. Touch the big cat’s face.
We definitely need wisdom to know the boundaries on what’s safe. Joe’s super safe. Sab’s adventurous (although post-baby, Sabs ability to handle “adventurousness” has probably decreased by 70% haha -she’s now an old woman). So, you can imagine our conversations. We are learning to work together – Joe in trusting God’s protection, and Sab in being obedient and not selfish. It’s hard, but what’s marriage without having to figure out how to live with someone and raise a kid? (Lol. Story of the rest of our lives).
We didn’t have babysitting for Nate on Thursday so I/Sab took the day off to hang with Nate. Honestly- God has brought me so far. I remember my first solo days with Nate- ending in tears and exhaustion and stress. But God is so good as Joe and I have both learned how to handle Nate and all his *extras* 😝. It was such a sweet day with my growing big boy!
In other news, my brother graduated from residency! Wooot! We are so proud of him. He’s come a long way. Hopefully we will be able to visit him in Texas!
We continue in this season of waiting and trusting God. Before Nate was born, we were told that heart parents learn to fiercely treasure each moment they have with their kiddos. And that is what we shall do over these next couple months before surgery!
Psalm 37:3-7 ESV – Trust in the LORD, and do good; dwell in the land and befriend faithfulness. Delight yourself in the LORD, and he will give you the desires of your heart. Commit your way to the LORD; trust in him, and he will act. He will bring forth your righteousness as the light, and your justice as the noonday. Be still before the LORD and wait patiently for him; fret not yourself over the one who prospers in his way, over the man who carries out evil devices!
We met with Nate’s surgeon in early May, and he has decided to postpone Nate’s surgery for a couple more months. Because Nate seems to be doing well right now and has a complex anatomy (meaning a more intricate surgery), he wants to give Nate the extra time to grow and further lower his lung pressures. It’s hard to be patient, but we are trying hard!
So in the meantime, Nate’s been a busy little bee… rooting for the Lakers, going on Target runs, reading, and visiting the splash pad!
Nate’s been a great helper when he’s at grandma’s house:
And he’s also accompanied Daddy on his grocery store runs. Ever since Disney announced retailing pineapple Dole whip, Joe’s been on a serious mission every weekend to find it. I don’t think it’s hit grocery stores yet, but we will continue look every weekend until we find it lol. Nate’s like….looking at ice cream again?!?!
Update on Nate’s feeding: We transitioned him to toddler formula, which we still tube feed to put less pressure on his oral skills. Feeding wise, we are working on it! Definitely not his favorite.
We transitioned to toddler formula. Praying that he tolerates this well.We are working on our oral feeds…but usually this is how it ends LOL
Update on Nate’s walking: Nate cannot wait to run like the big kids.
During PT, he gets to practice with a baby walker, which is the cutest thing.
It’s helped him take his first steps!!!!
This little kid has had a couple of busy weeks, and we are excited to see what (safe) fun summer activities are in store!
In March, we got to celebrate Nate’s birthday! Can’t believe it’s been one whole year! We kept it small and simple and just celebrated with his grandparents – who God has just given him the very best and most selfless grandparents. The kid had no clue what was going on.
A couple days later, Nate went back to the hospital for a repeat heart cath procedure to see if he would be a candidate for surgery….. And we got approval from the operating surgeon to proceed with his next open heart surgery, the Glenn procedure.
Some pics from our latest hospital stay – Don’t let those smiles fool you because this kid was ready to go home!
Also, we gave Nate a haircut because his hair was looking straggley =^-^=. To everyone who says Nate looks like Joe, I get it now … haha
BeforeDuringHmm…I don’t remember taking this pic lolThe final product
So what’s next?
Nate has a bunch of appointments each week until his surgery, including consults with the operating surgeon. Some are surgery related appointments and some are regular/wellness/development related.
We start being more strict with lock down mode again to keep Nate (and us) healthy.
While we do have a TENTATIVE surgery date scheduled for the end of May, there is a chance that surgery gets postponed if Nate gets sick or there are other emergency procedures.
Some prayer requests for our family:
Pray for Nate’s vomiting to stop as we wait for surgery. He vomits multiple times a day and it’s just so sad when he does.
Pray that Nate stays strong and healthy, as well as Joe and I.
Pray for Joe and Sab – there’s just a lot pre-op with things to do, being anxious, etc. Pray that we will trust God with everything.
Pray for rest for our family. It’s been tiring, and it will probably be tiring 5ever but the Lord is our strength and hope.
A recent verse that has been encouraging to me:
I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them. Isaiah 42:16
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