Gideon celebrated his 8 week post op anniversary this past Friday, 9/21. We had the privilege of seeing his cardiologist again which is always a treat. This time it was even better! He had another echocardiogram which gave us even better results than the last one! His last echo showed trivial Tricuspid Valve regurgitation as well as Mitral Valve regurgitation and stenosis. Both of those were expected after having the surgery he had and at the previous appointment, they were so minimal, they said they would likely never need to be repaired. They had never expected them to improve, but they have! When the cardiologist told me to listen to his heart this time, I listened and moved the stethoscope all around on his chest trying to hear his murmur and couldn’t find it. I figured my ears weren’t hearing that well that morning becuase I told him “I can’t hear his murmur today” and he looked back at me very excitedly and said “It’s because it’s GONE! He doesn’t have a murmur anymore!” We were both totally shocked! The echo showed that his heart has healed and up even more and his Tricuspid Valve regurg is gone and his Mitral valve regurg & stenosis are both improved and based on that, he believes they will continue to improve even more. But this result was even better than they could have ever hoped for being as massive of a repair that they did on his heart. PRAISE JESUS!!!!!!!!!!! So, so, so darn exciting! He told me that Gideons heart is functioning at about 95% compared to what his brothers hearts are functioning and within another month, after his post-op recovery time is complete, his heart should be at 100%, exactly the same as his brothers. I can’t fathom how that can be as he had a cadaver donor for his aorta and has bovine (cow) and gortex in his heart but he assures me, this is true. Ok, I’ll take him at his word. Thank you God, thank you modern medicine, technology, Seattle Childrens, the surgeon, the whole darn team. So much thanks to give. Thank YOU for the prayers! Wow. I’m just blown away.
Near the end of our appointnment, the cardiologist told me “I’ll see you in 3 months” with a smile on his face. I got tears in my eyes and said “But what about cold and flu season? We need to see you again during this time.” He assured me that I do NOT want to be taking to any doctors office for the next 6 months or so, to avoid him and all other doctors offices like the plague. He said Gideon is doing fantastic, better than ever expected and whatever I do for the other 3 boys to keep them healthy and well, I need to do for Gideon. I told him I generally do try to avoid doctors offices like the plague and often deal with sickness at home with supplements, essential oils & rest. He said that’s perfect, do the same for Gideon and call him if he gets sick at all and we will discuss it. He said he knows I can take an accurate pulse, blood pressure, respiratory rate, check his capillary refill times and monitor, ever so closely, his work of breathing and trusts I will report accurate findings to him and we can talk on the phone if Gideon shows signs of a cold or anything. SCARY! He also trusts I will call him at the first sign of anything because I’ve proven that to be true in the past. So he basically sent me on my oily way to care for Gideon like I do the rest which is awesome and terrifying. Lol.
We also took Gideon to a specialist this week for Trisomy 21 to make sure I know what I’m supposed to know and providing him with the best care and support that I can for his growth and development. Our childcare didn’t work out so we had to take all 4 boys to the appointment with us which was a nightmare and super duper high stress, but they all did fantastic and it went off really well. I’m so thankful we have these coloring kits that have always been reserved for doctors appointments only so they never get to use them unless they are in the doctors office so it’s a lways a special treat when they get to play with those. Food helped keep them quiet’ish too. Lol. The specialist had reviewed all his cardiology notes, copied all the notes from my phone into her report of all the questions I had listed to ask her and we discussed everything. it was great. She agrees with the cardiologist and pediatrician to avoid the doctors office like the plague, gave me a recommendation for switching his vitamins and basically just reassured me that we are doing everything that we can to best support his growth and development and he seems to be doing fantastic. Keep up with the weekly therapy, treat him like all of his brothers, same standards & expectations, same rules & regulations and he will grow at his own pace. She did mention most often kiddos that have stronger legs than arms with T21 usually take their first steps around 22 months of age. I’m wondering how accurate that will be so I guess we’ll find out in the next year or so. Gideon is 8 1/2 months old and is finally rolling over back to front and front to back and holding his head up well. He doesn’t have much strength in his arms so we are working on that but both the therapist and the specialist said he will just figure it out one day that he can push up on his arms and start doing it and move on from there.
The specialist also told me Gideon will be a very visual learner so I need to incorporate a lot of visual stuff into his learning. I’m going to do my best to learn at least a little bit of sign language to start there, similar to what I did with the other kids but I want to incorporate that into our schooling as well. With Classical Conversations, the homeschool co-op we are doing now, it’s mostly all memorization using songs and hand gestures so I’m going to try to find a source of the songs with ASL hand gestures so we can start learning proper ASL signs for the songs we are currently singing. I would love for us to learn at least some ASL rather than just random, made up fun signs to go along with our songs, especially if it will benefit Gideon even more. I’ve always loved ASL but never really learned more than the alphabet and about 15 words, most of which I’ve forgotten so I’m going to try to figure that out soon.
Gideon made it up to 12 pounds so that’s great! He eats 3 meals per day (solids) and nurses 4-5 times per day and 2-3 at night. We are going to re-start sleep training with him again now that we are clear the official post op period, with the blessing of all 4 of his caregivers (pediatrician, cardiologist, specialist & therapist) and hope to get him sleeping a bit more at night again. He used to sleep 8-10 hours in a row before surgery but then he got hooked up to the NG tube on continuous feeds again and woken up every 4 hours for vitals so that’s what he still does now at home is awake at least every 4 hours. Mama needs a little more sleep so we will do our best to work on that.
All in all, Gideon is doing fantastic. We are praying fervently for a healthy fall/winter season. I know of another heart mama whose baby is unrepaired (hasn’t had their heart surgery yet) who is currently fighting for her life and not winning the battle because of what started out as a cold. Her baby caught a cold and is now on life support with a long host of other, more severe, life threatening issues and is not doing well. The prognosis is not good. She is at her babies side with her 3 bigger kids at home and she can’t hold or even talk to her baby. She can sit silently and pray and that’s about it. I cry everyday for her because I remember those days. Sitting silently, desperately begging God to save my baby paralyzed in fear that he may slip away. Please pray for that family. Also that we remain healthy during this time, Gideon is repaired so he is in a better place but he is still highly susceptible to something like this. Please also pray for my other friend who is waiting desperately to hear some good news from a 2nd opinion doctor to see if there is any hope of saving her unborn babies life. She is 36 weeks pregnant and they have said her baby is terminal and not a candidate for surgery once he’s born so he will not live. He looks perfect on ultrasound, he has the sweetest name and most precious family and siblings just waiting for him to be born but they have been told he won’t live. They too, need your prayers.
I have so much more I would like to update and share but this has taken me a week to accomplish and I just remembered Gideon has therapy in a few minutes so I need to pick up before she arrives so we have a place to work with him.
THANK YOU for the prayers for our family and the other families. We pray for health & mental & emotional processing and healing for Bo and I. I’m starting therapy tomorrow actually to help me process through some of this stuff so I can try to work through it in a healthy way and start getting my mind and heart in a good place again. There has been a lot that’s gone on in the past 8 months with pregnancy, delivery, Gideon & all that’s involved with him as well as the other 3 boys, family stuff, marriage stuff, life stuff, just lots of stuff. I have a lot to unpack and resolve and look forward to starting that process in a healthy way with the help of someone who knows how to deal with it properly.
Love you all!