Friday night 2/2

Awwww I miss my boys already. I dropped them off at my parents house to make the swap with Bo back up at the hospital today. I cried before we even left home having to leave them again. I may get overwhelmed and frustrated and want to jam a fork in my eye at some point on most days but my boys are my happy place and it makes me so sad to leave them again. They look forward to spending time with daddy though and are excited for the swap. Daddy is more fun than I am. LOL. The fridge is stocked, a couple of meals are scheduled and there is some help setup for daddy to hopefully ease the load of being a full time, stay at home daddy to 3 boys which is a lot of work that he’s not used to for such long stretches of time alone.

My mom allowed enough time for Bo and I to even get some time together and go out to lunch to catch up. It was nice to just be able to sit and chat. We don’t have a chance to connect much when we’re separated as someone is busy at the hospital with Gideon, the other is busy at home with the bigs and we’re both SPENT at the end of the day when the kiddos are all in bed. Tonight for example, I had planned on helping with Gideons bath from 7;30-8:00, feeding him and having him in bed by 8:30 or 9:00 at the latest so I could update, pump & be in bed and asleep by 10:00. Well, our plans are all at the mercy of the nurse who takes care of Gideon and the neighbor boy (who requires a lot more care than Gideon) and it’s now 10:47 and I’m just getting around to writing a post. That’s ok though, I had a couple hours of good snuggles with him which were fantastic. I’m so glad that he’s comfortable with me and will generally just go right to sleep in my arms. 
This was even before he had his dinner since dinner was so late tonight! He is comfortable with mama and will chat with me briefly then go right to sleep. So sweet.

They took his NIRS monitor off his head, he looks so much cuter with 1 less sticker. We also took the splint off his foot tonight and didn’t replace that. He had 2 more blowout diapers, even in the bigger newborn size diapers, maybe he’s almost ready for size 1 diapers! But he had got some poop on the splint so we took it off during bath time and the nurse decided to leave it off since he wasn’t kicking and fussing around so that’s another less thing attached to him. He actually has legs again now and cute little toes, he’s not just a big blob of swollen fluids and looks a lot more like a little person now.

Medically, he had a fantastic day! His Milrinone is OFF, it’s been over 12 hours now and he has done awesome. His high flow air is at 2L, down from 4L the other day which is great. It’s humidified positive pressure so it’s more powerful than just a nasal cannula to help him maintain a consistent respiratory rate, I’m not sure when they play to shut that off to see how he does but they really wanted to focus on turning the Milrinone off first. The afternoon nurse even mentioned getting transferred which was the first time anyone has mentioned that which is both exciting and terrifying. He did throw a lot of PAC’s this afternoon which warranted a visit from one of the ICU doctors and a lengthy lesson for Bo and I about the P wave, QRS complex and T wave and PAC’s vs PVC’s, all of which I SHOULD know about from being an EMT but I’m not good enough with a 12 lead to recognize it all, especially because the way the leads are right now, it looks upside down to me. I’m used to seeing a rhythm in a very specific way because we attach our electrodes “white to right, red to ribs, smoke over fire, green left over” so we are always looking at the same direction and here the leads get moved every 2 days so sometimes it’s upside down on the monitor from what I’m used to and I don’t know how to read a rhythm very well. I can pretty much look and see if it’s good or bad but that’s about the extent of my cardiac rhythm interpretation.  LOL. We weighed him tonight after his 2 blowout poops and he has even gained weight! At birth, he was 5.17 lbs which they rounded up to 5.2 lbs. Tonight, he weighed in at 5.55 lbs! YAY!!!!!!!!!!!!!!!!!!!!!! Good job buddy!!!! Celebrating every victory!

As hard as it is to be away from my bigs and Bo, it’s good to be back here with Gideon. Rae, our occupational therapist “made me” nurse today. Ha. Gideon is still so small and they measure every ml that goes in and every ml that comes out, he’s got tubes and wires and monitors, no head control and is just small and scary for me. I didn’t want to try to breastfeed him. I’m totally fine with pumping and feeding him out of a preemie bottle, it’s very cute actually. But the goal is to be able to breastfeed (I guess) when we go home so we need to practice to see if we can get it down and do it safely and he can behave the way he is supposed to. So while it was terrifying for me, he did really good for his first try and we will continue to attempt once per day and cut out 1 bottle feeding and do 1 mama feeding instead per day plus the other 2 bottles for his 3 feeds by mouth. Hopefully he will get a bit better at it and I will get more comfortable with it and we will learn and progress together.

I think that’s about it for us. He needs to remain stable as the last of the Milrinone gets out of his system and tomorrow, we’ll discuss what the next milestone is for us to work towards. We still need prayers for excellent cardiac output, I would love to see less PAC’s, good kidney function, good labs, respiratory stability and an awesome weekend! We have no plans other than eat 3x per day and snuggle. I did bring some tax paperwork back to the hospital with me and hope to find some time to work on taxes a bit while I’m here this time as well as read my book but neither happened today, we’ll see how tomorrow goes.

I was able to catch up with 3 families today… the “boy down the hall” is doing great, His artificial heart is still pumping, he is still sedated and will be for probably a while but he is alive and that alone is a miracle at this point. He has had 5 surgeries in 16 days here. Now, he needs a transplant. Actually, now he needs to rest and regain some strength, he’s been through the ringer the past couple of weeks and needs to heal and get strong again so he can receive a donor heart when one becomes available.

Another gal had a day with good lab results. Her boy is struggling and they can certainly use some prayer for his bleeding to stop. Because of the valve they repaired in his heart, he now is required to be on blood thinners. Because of the complications he has had with a number of procedures, his nasal airway and oral airway are both inflammed and irritated and bleeding. He is on a vent and on ECMO again and his face is packed with dressings to stop the bleeding from all over due to the blood thinners. She is doing well with it all but they need prayers as well.

The gal I’m closest to here is still in the unit, I had expected she would have been released to the floor by now but they are still hanging out up here which she is fine with, she too is afraid to head out to “the floor” and is quite happy staying in intensive care until she feels more comfortable caring for her son as well. He is continuing to improve each day which is awesome as well.

Ok, I need to sleep. THANK YOU for praying for Gideon and our family. Our meal train with extras should be going live soon. There isn’t a ton of stuff on it right now but I will certainly be adding more dates and needs as things arise and we recognize what our needs are. Right now, we are adding some meals and some light housecleaning for it. I’m not sure exactly what that will look like, maybe help folding laundry or washing dishes or vacuuming, I don’t know but there is always something and we are happy to receive help if that’s someones gift/passion/desire. There will be child care needs added to that eventually as well when we have needs for babysitters or child care so we can swap out at the hospital or maybe for Bo and I both to be up here when we do get released to the floor so we can get our directions and guidelines together and move Gideon together. Again, we don’t know what the needs are yet so I will add stuff to the meal/care train as we learn what the needs are so keep an eye out for that and I’ll make it available on the FB group as well.

Seriously all, I can’t thank you enough for your prayers, comments, encouragement and love. I wish I could. I also wish I had the bandwidth to fill out and send thank you cards… people who have donated money via paypal, gifts we’ve received, meals, prayers, notes, just so much. You all have blessed us so generously with so much love, there aren’t enough thank you cards in the world for me to express how touched we are by your love. I do hope to get thank you notes out at least to emails (if they are listed) for the paypal donors so people at least know that we received their donations. I’ll add that to my list of things to hopefully accomplish in the not too distant future. You are so appreciated and loved, thank you.