Josiah's Journey with HLHS

07/01/2022

Just a little Update. He’s doing amazing. We still have one big open heart surgery. But not until he’s 2 or 3. Plus a couple more heat caths before then and after. But right now our baby is doing awesome!❤️💙

After a year of fighting depression and the fight to keep our son alive. We finally graduate Hearts at Home! Man the ups and down this last year has thrown at us. Should not be something anyone in this world should go through. But we did. Our baby is 9 months old. We didn’t even think we would get to know him. But here we are. I couldn’t ask for a better doctors or nurses. OU Children’s is the best of the best. We also wouldn’t have made it without Juanita. She has been my shoulder more times than I could count.. I can’t thank her enough. From when we first held before surgery. To today in his big boy car seat! ❤️💙

06/11/2021

Update on Josiah:

Jojo has made it through 2 of the 3 planned surgeries. Its been a rough ride getting to this point. A lot of unexpected hospital visits, and a lot of appointments. Usually at least 1 trip per week to OKC. He came home on oxygen, and for months we only got to see part of that gorgeous face, but he was able to shed the oxygen after his last surgery(yay!).

He has had 2 open heart surgeries and many procedures in his short life, but he is the happiest baby you are ever going to meet. He has a BIG personality, and he is loved by everybody that gets to meet him.

He is still recovering from his last surgery, and still going back and forth to OKC quite often. The cardiology team is planning another heart cath in December. This will be Jojo's third.

Keep jojo in your prayers and anything you can donate is greatly appreciated. Please give him a share!

19/10/2021

Just a little cute picture for now. We will update later In the day when we have a better understanding of everything. For now. Enjoy this sweet little face.

18/10/2021

Josiah Update.

First off I’m sorry for not updating earlier. It’s been a crazy weekend with him and everything going on. But he’s doing better now. His heart rate and blood pressure is finally stable. We have one of our two chest tubes out. We are on 2 liters of oxygen. Only cuz we have a chest tube in still. He’s in a lot I mean a lot of pain. And having withdraws We are trying to get pain and withdraws under control. It’s just a lot for him. He’s eating some. He’s just having a hard time right now. He hasn’t smiled since Thursday. I miss his smile so much! But please keep him in your prayers. I just want my happy baby back. Thank you all! ❤️💙

05/10/2021

Josiah has his semiconductor heart surgery the 14th. We are glad we got here. But we are so scared. So please Josiah and our family in your prayers please. Thank you so much! ❤️💙

09/09/2021

Update on Josiah.
Sorry for the wait on the update. We’ve been processing everything for the last couple of days.

We had our Cath done on Tuesday. His left PA was pinched and tiny so they ballooned that. His arch was once again a 26 gradient. We also got that ballooned it is now back to a 12 gradient. He has two extra vessels that we will probably get clipped when the surgeon goes back in. His lung pressures are high so we are waiting to hear about Glenn plans and everything. They will have a plan for us tomorrow on what needs to happen from here.
He also needed blood due to one of his levels being low.

Wednesday. He had so much fluid on him he couldn’t open his eyes. They started a medicine through his iv to help get some fluid off of him. He was on 6 liters of oxygen most of the day. He was also very fussy. But was stable.

Thursday. We are finally fluid negative! Yay! We are eating better. We have finally down to .5 liters of oxygen and possibly going home Friday! He looks so much better than he has this whole stay. He’s been breathing fast. But they don’t wanna send him home to early. So just continue to pray and send us good vibes to see if we can get his second surgery!

Once again sorry for such a long wait on an update. It’s just been a very long 2 days! ❤️💙

08/09/2021

Y’all please just pray super hard for my baby boy.

03/09/2021

On Tuesday our little Josiah has his pre-Glenn heart cath and sedated mri. We will be posting updates all day Tuesday. We just ask for lots of prayers. As this is the first step to his Glenn! But our sweet heart warrior is doing amazing right now! We are gaining weight now like needed! Our oxygen levels are staying where they are needed! We are truly blessed to have our little boy! Thank you all!!!

13/08/2021

13/08/2021

Update on Joe!!

Sorry it’s been so long for an update! But we have been home just growing! We went for our weekly visit on Wednesday. We found out his arch will need ballooned again soon. Also his left pulmonary artery is still very small. I’m not sure if it’s just not growing. But we were moved up on the heart cath list to have it done September 7th. From the beginning of October. We also found out that he is allergic to cows milk. That’s why we were not thriving. But we are now. He’s doing so well now! If you guys could just pray strength and fast healing as we are so close to our Glenn! Thank you all so much for the prayers and support through this time! ❤️💙

22/07/2021

Update on Josiah!

We need strong prayers! He needs to keep his oxygen levels up!! Also if he don’t start gaining more weight we are once again looking a feeding tube! Please pray hard that we can get both of these little bumps sorted out!!! But we got to go home today. But we were told to pack a bag for next weeks appointment. As we possibly might be staying! Thank you all!! ❤️💙

21/07/2021

Getting appointment ready guys!! Prayers for safe travels and good news!! ❤️💙

19/07/2021

We are home!

16/07/2021

Indian Taco Benefit tomorrow for baby Joe!

16/07/2021

Update on Josiah. We have tested positive for the third time for parainfluenza. They aren’t sure if he actually has it or he Will just be positive for a little while. He’s on a quarter liter of oxygen. His echo looks good. X-ray looks good, labs look good. We aren’t really sure what is causing him to de-sat. Possibly just gonna send him home on some oxygen as needed until his Glenn. Just keep baby Joe in your prayers. He has had a rough 3 weeks. Thank you!!

08/07/2021

Update on Josiah. He has been having breathing treatments every three hours. He also is dehydrated which we figured since he hasn’t been eating a lot. He’s on iv fluids. He also was off oxygen at 6:30 this morning. He had to go back of a half liter at 6:30 pm today. He is now on a quarter. So that’s really good. Still not wanting to eat but we are just hoping he can get over this soon. Thank you all for your prayers. We appreciate all of them! Please keep them coming! ❤️💙