Well, I had big plans for today but they all changed and nothing happened like I had hoped or planned. It was a great day, but an exhausting day and I realized that I just need to go with the flow, rest when I can (that would be now so this is going to be fairly short and extremely disjointed, I apologize) and make myself a priority. I wanted to nap, read, snuggle Gideon for a long time, pray, blog, write his birth story, meet with the social worker, find my way around in here, plus run home to unpack what I had brought with me expecting to be an ‘in patient’ person in the hospital living in a hospital bed recovering from giving birth while Gideon was getting watched to and repack to being an outpatient person who needs actual clothes so I can walk myself to the cafeteria and purchase my own meals and meet with the endless stream of staff that is in his room every 30 min or so. So here is a very quick, bullet type list of some updates for many questions I’m receiving as well as a couple pictures from today.
This is his room from the entry way door. Lots of monitors even though he is considered a very stable patient. There is a pull out couch behind all of his equipment where we sleep. I’m so thankful we get to stay right in his room with him. He is still on the ’emergency’ list for heart surgery but he is a stable emergency doing very well so his priority is very low on the list as of now. We know they have a cardiac conference scheduled for tomorrow afternoon where all the cardiologists get together with the surgeons to review ALL of Gideons cardiac studies so they will be all the fetal echocardiograms he has done to his 2 he has had since he was born, EKG, xrays, ultra sounds, etc. They are going to put it all together to confirm the 2 diagnosis we have so far and come up with a surgical / treatment plan. We will get to talk to them about it tomorrow afternoon/evening after their conference is done. We have been told tentatively, he is being considered for surgery on Friday. We don’t even know which surgery though because there have been a few things thrown out there so we have lots of questions to ask tomorrow when we get to hear all of their plans.
They made ‘sunglasses’ for him today while he was resting and they had to change out some equipment on him. How cute is that little nose and binky? The binky is actually pretty massive for his tiny face as you can see it spans across both of his cheeks entirely. It’s so cute. Prior to finding out about the 2nd cardiac issue, he was able to nurse after he was born for about 30 minutes. Then we found out about the 2nd cardiac issue and were told he is not allowed anything by mouth until after surgery now. He doesn’t have good enough blood flow to his gut to adequately process food and nutrients and it can be detrimental to his system to put food in it. So he is becoming a hungry boy. They started him on IV nutrition today so he is getting the nutrients his body needs to grow but they don’t go through his stomach so his hunger remains and there isn’t anything we can do about that. I am pumping milk and starting to store up a supply to get him fat and happy as soon as he can eat again after he has his surgery. They told me to expect him to get a bit more cranky each day that passes because he will be hungry although he is getting nutrition.
Bo went home to spend some time with the big boys tonight and give my parents a bit of a break. He will return tomorrow for our meeting after the cardiac conference is done so we can gather all the information together and talk to them about the plan together. THANK YOU for everyone who has offered to help with the boys, we appreciate it so much, you have no idea, we are so blessed to have such amazing support and love from our friends and family. We WILL take you up on your offers to help us as soon as we have a need to be met! We will let you know! Thank you, thank you, thank you.
I did get to snuggle him for a bit today. Being that it’s flu season and we’re in the Cardiac Intensive Care Unit AND we have a pre-op patient, they have requested basically no visitors and especially no hands on visitors but they allow us to touch and hold him so I took them up on that today. It took about a half hour to get all the monitors moved and situated so I could sit next to his bassinet and just hold him for a while in the chair and I started falling asleep after about 15 min so I didn’t even get to as long as I wanted to since I was falling asleep and needed to put him back to bed for his safety. I was sitting in on an echocardiogram they were doing today snuggling him from the sidelines in a very tall chair (they are so kind to me knowing I’m 36 hours post birth and got me a tall chair to sit in so I didn’t have to stand) but I started falling asleep in the chair too and had to leave when I feared I would fall out of the chair and crash down on everything causing quite a ruckus. I’m going to sleep SOON and hope to sleep all night long. So thankful for my time to snuggle my little warrior man though, he’s just a nugget head :)
Answers to questions: No, he has had not had surgery. Yes, he needs emergency surgery. Apparently in the cardiothroacic surgery world, ’emergency’ is a relative term. LOL. The cardiac conference is tomorrow (Tuesday? – I don’t even know what day it is). He COULD potentially have surgery as early as Wednesday but we have heard it’s tentative for Friday at this point. We will learn more tomorrow. We realized today that we will be here longer than we had expected based on the initial discussions with the cardiologist who saw us at St Joes. We are being flexible, going with the flow, doing our best to support one another, make sure our 3 big boys don’t feel completely abandoned by both of their parents while we both want to be here to stay with Gideon and hear every word that comes out of everyones mouth that has anything to do with his care up here because we want to know what’s going on and are just thankful for the support we have received already.
Yes, he is hungry. No, he can not have any food. With his cardiac condition, he doesn’t have good blood flow to the lower portion of his body including his gut. The great news is that he has pooped twice and is consistently wetting his diapers so stuff IS working down there, just not all at 100% so we have to be protective of his organs. His little toes and feet turn a scary shade of purple when he gets worked up about something and his legs and feet will get pretty cool to the touch if not swaddled up to his body in blankets. He loves to be swaddled tight. The surgery will correct that so he has adequate blood flow equally to his entire body.
There was a lot more that I wanted to say but I need to sleep. Please pray that the cardiac conference tomorrow is easy for the team to come to consensus about the best treatment for Gideon and that we can have an expedited surgery if that’s the plan for care that we all agree on. He needs some food. We want to get him healed up and headed home to be a part of the family at home with brothers who are so excited to meet him. We need some time together with just the 6 of our family to spend time together and debrief this whole ordeal. So those are the prayer requests right now, successful conference, expedited surgery if that’s his best method of care, healing for him, me, wellness for the whole family to avoid ALL sickness because he can’t be around anyone who is sick, peace and rest for us all as well as my parents watching the kids.
I have SO MUCH MORE that I want to say. Hopefully I will find time soon to sit down and write the endless thoughts I’ve had lately about so much stuff going on inside my head. A lot of it has to do with you who are reading this. But for now, I shut the laptop and rest. Thanking God for his provisions and thanking God for you who are supporting and encouraging us in prayer and in so many other ways as well. And thanking YOU for doing it. I cry thinking about how God is blessing us so much through all of you. But that’s another blog post I hope to write soon.
The Bradshaw Crew – Kari