Today is a big day! Gideon is 6 weeks post operative from his first heart surgery! That means his “sternal precautions” are lifted today and we can start with more therapy to start building muscle strength and control. We can now lift and hold him normally (which I am still terrified to do knowing his sternum is wired shut internally) and he can have tummy time to start developing some neck muscles so he will be able to hold his head up eventually. I’m very excited for that!
His scar has healed beautifully as you can see below. We still have the NG tube and probably will for a while. We are trying to transition away and only use it at night now but I found out today we need to spend another day up at Seattle Children’s for a swallow study for him. He started on reflux medication tonight which most cardiac babies get but they want to do a study to make sure he isn’t aspirating any of what he is taking in because he doesn’t eat quite right.
He decided today would be a bit of a backwards day with his sleep schedule. Bo and I have always sleep trained our kids from very young and had planned to with Gideon as well but that all went right out the window when he had to have emergency heart surgery. Until we got on the hospital schedule and were sent home with a schedule for him for eating and awake time, etc and it’s exactly the sleep training schedule we have always done so it was perfect! His doctor and cardiologist and the whole team at the hospital all recommended what we had originally planned to do and started him on that schedule before we even left the hospital. Today was one of those days he decided he didn’t like the schedule and wanted to do his own thing. Not a huge ordeal but he still needs to eat a lot and rest a lot and gain weight so we have to minimize how upset he gets and for how long. We are not the ‘cry it out’ type of parents anyways for the most part but really can’t be that way with Gideon because it burns too many calories and he can lose weight from crying. Boy, wouldn’t that be nice sometimes? Lol. Between his night time feeding schedule and his brothers growing pains lately during the night, mama hasn’t slept for a while and had hoped to nap during nap time today. I always put all 4 boys down at the same time so I can make phone calls then or schedule appointments or get stuff done or just rest if I can and had planned to rest today but Gideon had other plans. He was quite happy when I brought him in my bed with me but he still didn’t sleep.
Elijah and his brothers love this guy so much, it’s the sweetest thing ever. Gosh I wish I had more time and energy during the day to spend more time with each of my other kiddos, they are so awesome (usually) and often take a back seat to me tending to Gideon. They never complain directly about it or seem to be upset at Gideon for it though they may act out in different ways as a result of it. I understand where it’s comjng from, I’m just not very graceful about it. I can work on that.
Prayers: weight gain and excellent eating skills! He really needs to progress with his oral feeds as we follow the plan to get rid of the ng tube and gain strength and control before his next surgery.
Please also pray for rest. Especially for him and I. He can have some funny breathing when he sleeps which will cause him to stir and causes me anxiety because I just lay and listen to it since he’s only 2 feet from my bed. He needs rest to grow and I need rest to regain sanity, I certainly don’t need to grow!
He did a big poop tonight so we don’t need prayers for that one right now!
Please also pray for our insurance coverage. Because of his cardiac condition, he is required to get some special vaccines that cost just over $10,000.00 each and insurance has denied them. We have 2 more to get and he can’t get them at Seattle Children’s because they only administer them to in patient status patients so they want payment at the infusion clinic when we go in this week. Our doctor is appealing on our behalf and hopefully that’s all it will take to get insurance to change their mind and cover the shots but the next appointment is this week so they need to figure it out quickly.
Thank you, thank you, thank you, love you and God bless!