my little man has T21 and a congenital heart defect called tetralogy of fallot he has an overriding aorta, pulmonary stenosis, and two large murmurs. He was born at 32 weeks at 3lbs 7oz and spent 5 weeks in the NICU and then another 2 weeks in PICU.

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(11/27/18)

So we have a huge update. He has now been home for about 9 weeks and he’s been doing awesome, his cardiologist called him a “pink tet” which means he’s basically at his peak of health with his CHD he’s also 10 lbs now and growing. We have a surgery date which is unfortunately 2 days after Christmas but that’s alright!

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(11-28-18)

So it looks like I spoke too soon our little man had a tet spell and turned blue so he had to be care flighted to Texas children’s to have his repair. Texas children’s is the #1 heart center in America so we were pretty confident but still nervous

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(11-29-18)

It’s 2am and we finally arrive and he’s hooked up to soooo many wires, though not near as many as he’ll have after surgery

We get to bed and wake up around 10 am when the CVICU team starts rounding on William. They tell us that they’re going to watch him until his surgery which would be Monday or Thursday when the surgeon is free.

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(11-30-18)

William now has a surgery date of Monday the 3rd. So now we’re anxiously waiting for the next two days. we’re still optimistic that he will come out thriving even though everything seems to be going wrong today. We had money and had everything settled with our daughter being taken care of by her grandpa we were both sleeping at his bedside since they have a queen size bed in his room with him. But we then get the news that her grandpa needs to go back to work and can’t take care of her so we said fine she can just sleep with us here at his bedside since we have NO ONE else to watch her. But she’s only allowed two 30 minute visits/day and not allowed to sleep at bedside but we have no money for a hotel for an entire month and we don’t qualify for Ronald McDonald house because there’s room for both parents at bedside. So now we’re completely lost we have no idea where we’re all going to sleep and then we go to meet her grandpa to pick her up and our car tire is flat with no spare tire. But things started to pick up. We found an air pump for the tire and then we found out that her grandpa paid for a weeks worth of hotel stay for us. Hopefully everything goes great with his surgery and he’s healthy afterwards!!

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(12-01-18)

today little guy was trying too hard to eat and he was stressing himself out his pulse when up and he was breathing too hard so we had to put in an NG tube for him to eat from. He also got to see his big sister today!! 🧡

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(12-02-18)

Today William is doing good he has to stop eating tonight for his surgery tomorrow morning! We’re getting more and more anxious as the days go by and his procedure gets closer! He got to come off of the oxygen since he started breathing well on his own!!

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(12-03-18)

His procedure went well! We got updates throughout the whole thing and we got to see him about 40 minutes after they got him into a room Around 6pm

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(12-04-18)

William got extubated today and also got his LT line out he’s still got his arterial line in and two chest tubes but he’s awake and gets to eat around 8pm!! He’s such a little trooper. He’s still a little groggy but so far so good!!!

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(12-06-18)

YAY!! So today he’s got an order to be moved from the CVICU to the step down unit!!! I also got to hold him for the first time since his surgery and I’m so happy I feel so good! He’s a few days closer to coming home to us and he’s doing so good! He still has his chest tubes but the plan is to remove his pacemaker wires tomorrow and then afterwards if everything is good NO MORE CHEST TUBES!!!😭🧡

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(12-08-18)

So today William got to move to the step down unit he also got his pacemaker wires out and hopefully his chest tubes will be gone within a couple of days. He’s so happy and thriving today!

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(12-09-18)

Today William started showing milky substances (Chylothorax) coming out of his chest tubes and they’re still putting out quite a bit of fluid. Basically what’s happening is his body is making too much fat and it’s seeping out from his chest tubes so they changed his formula and hopefully the output will start to decrease!

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(12-12-18)

William has a newfound blood clot in his right arm and he’s being put on lovenox shots(blood thinners) twice a day to hopefully decrease the clot without it breaking free! He was pretty tired all day today because the shots are painful and he cry’s himself to sleep each time.

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(12-16-18)

Today William was in a pretty good mood. There’s talk about his chest tubes possibly coming out tomorrow (YAY). He still won’t eat by mouth seeing as the formula change because of his chylothorax is absolutely disgusting. So we’re still working on that. If he doesn’t want to eat by mouth by the time we get to go home he’ll have to get a G-Tube put In his stomach for him to eat until he can get off of the formula in 6 weeks.

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(12-27-18)

William gets discharged today!!! YAY!!

He still has to go home on an NG-tube because he won’t eat the nasty formula to treat his chylothorax! But all is well!!!

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(1-12-19)

We’ve been home for a couple of weeks now and doing awesome! I’m so happy for our boy, he’s been such a little trooper through it all!

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(3-29-19)

William will be 8 months old soon and is doing amazing I’m so happy to still have my healthy boy in my arms. Thank you to his doctors and surgeons who helped us get this far!

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(10/21/19)

William is 15 almost 16 months old now and the happiest boy alive we are so thankful for this little man and the amazing journey he has shown us.

CHD Babies