Adjusting at home – Friday 2/16

It’s so good to be home! We’ve been home for a week today. It has gotten easier but doesn’t feel quite manageable to me just yet. Medically, Gideon is doing fantastic. You can see in the picture below, he is still packing on the weight, he’s about to blow out the buttons on his sweatshirt :) We saw his pediatrician for his newborn appointment when he was 32 days old. He had gained even more weight since our cardiology visit on Tuesday, GOOD BOY!

We finally did a ‘bath’ at home. I’m too scared to actually put him in the tub yet even though we do have one of those baby tubs with the sling in it that’s supposed to keep them safe. It’s different when your baby is just a tiny guy with his sternum wired shut on the inside and you don’t want to round/arch his back and still can’t pick him up like a regular baby. It’s a little too uncomfortable for me so I laid a chucks pad out on the bathroom rug and just dumped warm soapy water on him and washed him that way. Yes, mostly with his diaper on. Mama is smart :) He wasn’t a  huge fan, maybe next time.

Hi everyone!

I attempted to put him in my ergo just for something different, so he’s not laying flat on his back on the floor or on his mat or in his wedge. It was ok but I have to hold his head because he still has absolutely no head control at all so I think he needs to get a bit stronger to be safe in this. The infant insert says it’s for babies 7 lbs + which he isn’t yet, we may practice a bit and see how we do but this won’t be a regular thing for us for the time being. We’ll get there, eventually.

We are also practicing sitting up to look around. He’s not great at it yet.  We will keep working on it.

Our friend Laura (#HUNTERSTRONG) gave us some of these NG tube stickers to try, I didn’t like the stuff from the hospital that kept peeling up off his face and had googled cute stickers since I’ve seen kids with them on and remembered I had seen Hunter wearing them as well. She let me try a few and we love them so far! They certainly look cuter than the hospital tape and seem to stick great, hopefully they work out for us. Thank you, Laura!

Amidst the chaos and the NOISE, (Oh LORD the noise), I’m so thankful we are all here together. I bark at the big kids more than I want to, I need to work on that. Elijah is so sensitive, he just has a tender heart and it gets hurt easily and I cry daily for him as we are learning our new normal and adjusting to this season but I know even he is thankful we are all together and not separated and in the hospital anymore. We haven’t told them that we will have to go back again for Gideons “big” surgery in a few months. That can wait. For now, we will enjoy being together and work on finding our groove here. I’m gaining confidence everyday and learning little tips and tricks to make things run a little more smooth, I have a lot of learning to do though and need tons more energy to keep up with it all. In time, it will get easier as well as when Gideon gains more strength and health and we can get rid of the feeding tube, that will save us quite a bit of time, also if I can breastfeed more which means I’ll pump less and fortify less, that will save a lot of time as well but for now, he needs it all to grow so we do our best. I’m trying to find an Xbox Kinect game that the kids can play to work out their wiggles for days we are inside and they are full of energy but I need to find one that’s young enough for Solomon to be able to follow along with. I also want to research to see if there is a great learning station on tv for them all to watch. They do love the Wild Kratts and if I’m going to be utilizing the tv more to engage them, I would prefer to do it with something that will benefit them in addition to being fun.

This is all of us tonight. I’ll get a decent picture of the family eventually but Bo used his fancy phone with a kickstand and a timer to get this one. The camera on his phone makes me want to upgrade my phone. LOL.

Prayer requests: Health for us all! We haven’t gone to co-op or to church yet for fear of sickness. We don’t want to be paranoid and crazy but we can’t risk what’s out there right now in this season so we are hanging out mostly at home declining visits from anyone who has had exposure to sickness which is most people at this point. It is a bummer but we have to do our best to all stay healthy so nothing passes around in the house.

That I get a good routine going by myself for when Bo goes back to work. Monday is a holiday, YAY, I get 1 more day of help but I am trying to do more and more on my own and want to rely on Bo a little less which I haven’t done that much yet. I thought about it this morning, to not have him help out for the morning routine and just have him help at 10am so it would be like I have outside help like I have scheduled on the calendar for next week and try to take care of everything on my own but that only lasted until about 855 this morning. LOL. Maybe tomorrow it will last longer? We’ll see. I might as well utilize the help while I have it for the next 3 days before it’s gone and I can sink or swim then.

For peace in our home. Like I said, medically, we are doing great right now. Gideon still isn’t eating as well as we would like orally, he had some respiratory distress today with oral feeds but I watch closely to his breathing and remember to treat HIM not treat him as if he was a patient and I was an EMT on a call because he would certainly be considered a “sick” patient in my fire department world. With a respiratory rate of 78, sub & intercostal retractions, I would normally freak out a bit, but for him, that’s just learning how to drink from a bottle or a boobie. Once he finishes eating, he gets back down to his normal respiratory rate of about 60 with only subcostal retractions which is normal for him. I follow the guidelines I have been given about training with oral feedings and tend to be more on the conservative side than they were in the hospital because here at home, I don’t have the interventions they had at my bedside in the hospital so I want to make sure I don’t push him too far. All that to say, we need more peace in here for the 3 big kids becoming a bit more independent and getting a good routine down and joy for us all.

Thank you for continuing to follow along and support and encourage us! It should be a pretty quiet week for us next week, so far all we have scheduled is a visit from the home health nurse. The following week will be CRAZY though with tons of follow up appointments and therapy (for Gideon… though that’s probably not a bad idea for me at this point – LOL!) and home visits, we are learning about all the resources available to us and want to do our best for him so we will stay pretty busy! We covet your prayers and are so thankful to you for continuing to lift our family up. Thank you!! God bless!