4 months post op – November 2018

We got to see our cardiologist today for our 4 month post op checkup. Gideon did great! The cardiologist didn’t even do a repeat echocardiogram because Gideon is so “robust” now. Lol. What an endearing term. :) Yes, he has grown quite well and gone from 1.5% on the growth chart to 5% on the growth chart in the past 3 months. He weighed in at just over 15 lbs! His heart sounded perfect, lungs sound great, pulses are strong and equal from head to toe, blood pressures were good and he’s got some good fat on his tummy and thighs. All things that made the doctor smile and reassure me that it was a very good repair. We pray for the next 3 months that his heart continues to heal, specifically that his AV Valve stenosis & Mitral Valve stenosis heal completely and his trivial VSD closes completely. 1 in 4 kiddos who have the surgery he had need additional repair within a few years of their initial surgery and so far, it looks like Gideon will not be one of those kids who do. If his heart continues to heal and improve, the farther away we get from his surgery date, the lower the risk is for needing additional repair. We will do an echo again in 3 months to check his function but so far, it looks like an absolutely excellent repair that should last his lifetime! Thank God!

This is him today hanging out at the cardiology clinic. He’s very comfortable there and loves his cardiologist.

He is generally a very happy guy. Unless he is tired. Or hungry.

Elijah is absolutely enamored with him and the 2 of them have a very special bond. Gideon LOVES his biggest brother so much, it blesses my heart to see how much love the 2 of these brothers have for one another. Look at Gideons face, it’s about to explode with love and giggles for brother.

Gideon is an excellent eater. He is eating pureed baby foods and has 3 solid meals per day. He is still full time nursing as well. He eats himself nearly into unconsciousness sometimes. That could be a problem in the future with portion control but for now, I just want to fill his tummy as full as he will allow and pray for good nights sleep! Lol.

Gideon is starting to love bath time also. He has never been a huge fan but he just kicks back and relaxes. This week he learned that he can splash. And boy does he want to SPLASH now. Just like big brothers did in this same tub for the past 7 years.

We are trying to keep him upright as much as we can to prevent his head from getting flat and strengthen his core muscles so he can sit up hopefully soon. (He will be 1 in a month!!!!!!!!!!!!!!!) He has hypotonia (low muscle tone that affects all muscles in his body, including his digestive system) and ligament laxity (ligaments that are too lose) which leaves him with hyper flexion. His right ankle specifically will turn around almost 180 degrees causing him no pain at all. We are hopeful that his Nike Air Jordan high top shoes (borrowed from the therapy center) will be the support his ankles need to remain in alignment and strengthen those muscles properly as he is starting to bear weight on his feet. How cute are they!?!?!

He has recently found his toes and he loves them. I love that he loves them. It’s so adorable.

His therapist and I are working on cup and sippy cup training him now. He is still full time breastfed and doesn’t take liquid from a bottle (his suck, swallow, breathe reflex is perfected for breastfeeding, AWFUL for bottle feeding) so we’ve just never really used a bottle for him. But as we approach his 1 year birthday, it’s time to start progressing so that he can be a little more independt from me and not need me every 3 hours to sustain life. He was drinking watered down yogurt in a cup but we are avoiding dairy as it’s constipating (that whole low muscle tone thing again) so now he gets pureed fruit with water to drink from his cup. He is doing well but no where near holding his sippy on his own or taking more than a sip at a time.

This was just adorable in his “I survived heart surgery, what’s your superpower?” shirt that Janine made for him so I had to post it.

Hands and feet at the same time. The way he GNAWS on his entire fist, you’d think he would be popping out teeth but there’s nothing there yet! None of his brothers had any teeth prior to their 1st birthday so he will get them eventually.

Foot? On the table? Ummm, fella, it’s adorable but poor table manners… Hahaha

We did get hit with a bout of croup in October. That wasn’t fun. All 4 boys. No thank you. We made it through without a hospital admission, thank God. Praying we make it through the rest of cold & flu season HEALTHY!!!

This is a bumbo type chair with a tray and toys we are borrowing from the therapy center. It has a higher back so more support, it cracks me up how his feet hang out. He has a hat laying flat on his head that a brother put there. He is a fun toy for brothers to play with.

Sleeping “like a baby”… he sleeps great for a few hours at a time. We are working on that now as well since his heart is repaired and he is healthy, time for some SLEEP TRAINING! He has had a few nights of sleeping 7 hours in a row, I just need to get those consistently now so we can both get decent sleep!

Prayers are for his heart to continue to heal up, for him to start catching up developmentally since he doesn’t have any restrictions and just general health for him, his brothers and the family as a whole. We have a few more appointments coming up in the next month and will be posting more then as we celebrate his year birthday and have lots more testing done and labs to take a “global look” at him being 1 year from his first open heart surgery.

The other 2 families who I had asked for prayer for are doing GREAT! Both babies have been released from the hospital and are home with their families growing and thriving. It’s hard to bring a medically fragile, special needs baby home with all their meds and everything that comes along with it and we only came home with a few meds and a feeding pump so those families could both use your prayers. 1 of the babies had her 2 surgeries and is doing well, the other is waiting until he gets a bit bigger for his big surgical repair but he had his first and is doing well also. These kids are SO STRONG. Might warriors just like Gideons name means. :)

THANK YOU for following along his journey and supporting our family throughout this. Much love and many blessings to all of you! <3

Kari

4 months post op – November 2018

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