Not too much to update you all on… Gideon received his SPIO suit (stabilizing pressure input orthosis suit) – basically a super thick spanx with a hard plastic back panel and the therapist put it on him today. He was not thrilled. We are supposed to start with an hour per day working up to all awake time as he allows. He wasn’t a fan of it yet but hopefully he will be comfortable in it soon, he really did sit up so much better and have great control of his head with it on, it was very cute even if he was mildly miserable in it :)
His cardiologist called me today as well. He received the results from the last swallow study we did last week as well as my email message I sent him with his past 2 weight checks we had done and asked what our feeding plan was that I was doing. I told him Gideon is exclusively breastfed and is now getting 2 servings of either rice cereal with breastmilk or avocado with olive oil or coconut oil per day in addition to that. He said great, whatever we are doing is working well, he is growing great and right on track for where we want him to be for surgery. Yay!
Reviewing that with the therapist today, she did agree with the in patient therapist we saw last week who told me to add back the bottle, even if it’s just 1 per day so we have that to fall back on at surgery time if we need it. The goal would be #1 to breastfeed after surgery just like we are doing now, #2 would be to bottle feed and last resort would be to put the NG tube back in if we had to. But if he doesn’t take a bottle, we have no backup so he does need to work on his skills of taking a bottle with thickened liquids so he doesn’t aspirate. Ok. Great. Yes. I can fit this into the schedule. Currently, his is scheduled to breastfeed 6 times per day at about 30 minutes each. I’ve now added pumping 1-2 times back in per day just to get enough milk to make his daily cereal which takes 15-30 min. In addition, he gets fed cereal which takes about 15 min per bowl twice per day and now I need to pump at least 2 more times per day to make enough milk to add bottles in too. Last night, he ate 3 extra unscheduled times and I think I got about 3 hours of sleep total. With the added feedings & pumping sessions and the decrease in sleep, I’m pretty sure I won’t be able to keep up anymore. I can’t breastfeed plus bottle feed plus feed solids mixed with breastmilk, get no sleep and still have enough energy to feed the both of us. Darn, this would probably be a great weight loss plan if I wasn’t eating so horribly myself. I have at least doubled my water intake lately, if not tripled and need to keep that up and need to figure out some more convenient foods that I can just grab and eat for myself. Currently I eat tillamook moos, costco trail mix, cashews & almonds and dinner for the most part. Then unhealthy snacks after dinner. Naughty me. I’m working on trying to figure out when I can get some more sleep, increasing fluids and will get creative with healthy eating snacks and apparently more TV time for the kids so I can have more time to pump, measure, feed & bottle Gideon. I think just feeding him alone takes me about 6 hours per day right now if I add it all up together. Then add to that his therapy time, my other 3 boys are getting sorely neglected right now. They are so patient and kind with me about it though, they don’t seem to harbor any resentment toward Gideon at all which I’m so thankful for. They just need to get out more so I need to work on making Gideon a bit more flexible. He is used to sleeping in his bed for all his naps and I’m just not up for holding him for an hour of crying if he misses it so I try to make sure we are home for them which means the kids can’t just go play at the park all day long. But, it was good news…. well that part was, he is growing well, I just have to find a way to maintain that.
Other good news, he is finally discovering the right side of his body. He is enamored with his left hand (the therapist said I need to get a rattle of some sort or something colorful with texture that I can strap to his wrist so it will be more therapeutic for him rather than just staring at his boring hand, he will have something else to explore so I need to look into that. But I’m so glad I caught him sucking on the fingers of his right hand earlier today laying on his right side on the mat. That’s progress too! I also received some bad news today. The cardiologist informed me that the surgeon we have chosen to do his next repair, which is the same surgeon who did his first and is also the best of the best in the state has taken another job. He is moving to Pittsburgh to be the head of pediatric cardiothoracic surgery for the #1 pediatric cardiology department in the entire nation. Yeah, exactly, he’s the best of the best. And WE WANT HIM. We liked him so much, not only is he the best of the best in his area of expertise, he is just an awesome dude for the 2-3 hours we’ve got to spend with him. The hope is that we will be able to sneak in Gideon’s surgery prior to when he leaves in 2-3 months but our cardiologist wasn’t sure. He is going to reach out to him and request that we get Gideon’s repair done before he leaves if he will do it either end of July or 1st of August. Based on this new information, we may find out our actual surgery date earlier than we planned. We were originally going to find out when he was scheduled probably about a week in advance but we might be able to get some more notice now because the surgeon is going to quit doing surgeries and start handing the department over to whomever else is coming in. Boo.
A few prayer requests:
1. His surgeon will fit us in for his 2nd repair before he leaves either at the end of August or first of July as long as Gideon is stable throughout.
2. Gideon continues to gain weight, even at a faster rate since we only have 8 weeks left to do it.
3. I get more sleep and can keep up with his feeding and therapy schedule as well as enjoy my other boys more and stay sane, or at least fake it well. I’m also starting to THINK about trying to plan and prepare advance meals for when I/we are gone for his next surgery stay. We are planning on him being in the hospital for up to a month and want to be prepared for that and just hope and pray he flies through exceptionally well and we get blessed by getting out early. I’m only in the thinking stages at this point and will be adding dates to our care calendar/meal train when the time comes if anyone desires to help out in this way.
4. Our marriage.
5. Preparation for and help with the time I/we will be gone again at the hospital. We have learned our limitations with our last stay and are much more open to help as we prepare for this next round and want to set ourselves up for success and will do our best to communicate our needs and pray that there are volunteers or help to be hired who can come help us out, mostly with the boys at home when only 1 of us is at home and the other is in the hospital. Also when we bring Gideon home again and we adjust back to all 6 at home again, hopefully with no medical equipment and our only restriction with him being ‘sternal precautions’ meaning our only concern is how he is picked up, held, positioned, etc. which we know for sure he will have for a minimum of 6 weeks after surgery.
THANK YOU THANK YOU THANK YOU. You guys are our life support both physically and spiritually and we are so immensely thankful for all your prayers and your help.
So much love and many blessings to you!
3 Replies to “Update & Prayer Request 6/6”
Prayers for all, Kari, I wish you and your family the best of everything, hugs to all!!!!
Kari you are s very busy gal and Gideon looks wonderful. Your whole family has helped with this challenge, but Gideon is surviving because he has a wonderful mother!😘. You are all in our prayers and we are cheering for sweet little Gideon!!😘🙏
Praying for your sweet family! XO