Cardiology Update 4/19/18

We got to see the cardiologist today, what a lucky day for us! We enjoy Gideon’s cardiologist so much, he is just a nice guy to be around and is so good with Gideon and reassuring to us and kind, we look forward to our time in his office. Thank goodness too since we will see him for… well, at least 18 years! Lol.

Last time we were there, he basically gave me the freedom to do what I wanted with Gideon’s feeding. Bottle, breast, formula, NG tube, let him sleep, wake him up, I could decide all of that on my own as long as the results were within the parameters that he set for us. I have adjusted things quite a bit since then and the results were better than expected! Gideon is now exclusively breastfed, no more bottles and no more formula and will even sleep 10 hours at night, yes, all in a row! I made a few changes over the past 4 weeks that got us to this point but haven’t changed anything for just over a week now to make sure we could maintain good weight gain with this new routine and he’s done fantastic! 

His weight today is 8.87 lbs, still basically the weight of a newborn at just over 3 months but his height and weight maintain a steady increase although he is in the 2-4% on the growth chart.

The doctor asked if I had any questions and I rolled out the scroll. Seriously. I keep a list of questions on my phone for all of our appointments so I don’t forget. He laughed with me and was very gracious to go over everything with me even pulling up research information on the computer to confirm and show me documentation of things I questioned then stepped out to do his own research to confirm his thoughts on things. He examined every part of Gideon that I had a question about and said he’s doing amazing, keep up the good work.

Our plan is to return in 1 month for another exam and an echo cardiogram to check the status of the pulmonary band and his perfusion and cardiac output and go from there. The band sounds great from what he can hear and we will get actual measurements of blood flow next month to see how much it has constricted as Gideon has grown. His oxygen saturation today was at 94% which is fantastic for a fella with a band constricting the blood flow to his extremities so we were pleased to see that. His saturation has always been a bit higher than they expected it to be, but the surgeon made the band pretty big for him so he would have lots of time to grow into it.

The surgical plan at this point is to consider surgery around Gideon’s 6 month age. That would put us having surgery mid July. Depending on the measurements from the band and his growth rate at that time, we may push it out another month or 2 if it’s safe to do so, just so we can enjoy a full summer of playing before we have serious restrictions for the entire family for a decent period of time again but it will all depend on how he is doing closer to that time. Pending no emergencies, we will be able to schedule it at our leisure, but we won’t have a ton of notice before we do. We hope to have as much notice as we can so we can plan accordingly and be able to set up a care team again of friends and family who are willing to come and help our family out while Gideon is living in the hospital and we are rotating shifts up there with him and at home with our big boys to have help at home with care for the kids, food, housework, etc.

I could ramble on more but some baby is awake and yapping for his afternoon snack so I need to go feed him. Imagine that, 3pm right ON THE DOT and he starts barking for food. Lol. His wind up to getting fussy actually sounds quite a bit like a bark, it cracks my dad up and he begs to hear it.

I have so many other blog ideas and updates I could do, I just don’t make the time to do them all. Be on the lookout for a funny post in the near future with some truth bombs about parenting. Just some stuff  you would normally crack up about watching on TV but couldn’t imagine happening in your house, yeah, that stuff, it happens here. Lol. Hopefully I’ll make time to blog about it soon. You will laugh. We cry. Hahaha, just kidding.

Thank you all for following along!

Prayers are for continued weight gain and we could actually use some prayers for his core strength. We work with a therapist each week on his core strength and head control and it’s SLOW progress. We are diligent to do his exercises and stretches everyday to help him gain strength as best we can which will help his pulmonary and digestive systems as well as just physical strength so we have more freedom with him like being able to be worn in the carrier to go out, etc. Also for health for our whole family. We have been so incredibly blessed this cold/flu season to have avoided pretty much everything and have now gone back to church and attended co-op so we need to remain healthy! All of us! Gideon is doing fantastic, stable and growing but even just a cold right now would land him back in the CICU and could have a huge impact on him and our family so we do our best to take our vitamins and wash our hands, get lots of sleep and avoid getting exposed to any bugs to the best of our ability. We do spend more time at home than we ever have before which is a blessing and a bummer, sometimes it can get boring avoiding parties or crowds or events we would normally like to attend but it’s also a lot of work getting 4 kids out of the house and sometimes it’s just easier to stay at home, blast some Toby Mac and have an epic family dance party in the living room. We generally welcome healthy visitors, just check with the medical schedule for the week and know that the 3 big boys will literally DIVE on you if you come over to visit and beg mercilessly for your attention. They are still a bit starved for attention and fun.

Much love and many blessings to you all!
The Bradshaw Crew –  Kari