Wednesday Morning 1/17

Wow, I have so much to write. There are literally a million things in my mind that I want to share with you all. I’m going to just sit down, let me fingers lose on the keyboard and what comes out, comes out. It will be a disjointed, unorganized, emotional mess of thoughts and stories so please forgive the mess of it all but I want to share how we are doing, ,what’s going on, how God is blessing us, just a whole bunch of random stuff. So here goes….

Last night getting a break from the bili light. No oxygen!! YAY! The plastic looking puffed up tube around him is his heater. He can’t have blankets due to the bili light but he doesn’t  maintain his temp very well and he can’t have an overhead heater due to the bili lights either so this is a ventilated tube that goes all around him filled with warm air pumped inside to keep him warm. 

His birth story is hysterical. I will save that for another blog post. You will laugh when I get a chance to write it :)

How are we right now? We are good. Bo and I are both at the hospital, a friend has the big boys today and they will go back to my parents house tonight. I can’t even express how thankful I am that Bo and I have mostly been up here together the whole time and the kids are cared for near home. We are going to need more help with childcare and will likely come up with a sort of schedule (I have a friend working on this for me already) for people to help out with things like child care, probably some meals, stuff like that. We aren’t to that point yet but it’s in the works and will be posted when we figure out what the needs are, where, how and when.

All 3 of us slept at the hospital last night which is HUGE. I hadn’t slept since last Tuesday evening (that’s about when labor started for me) so I had become quite the train wreck walking around like an absolute hormonal, emotional, exhausted, sore crazy woman in a thick fog. I slept for 4 hours in a row and was ready to get up and take on the day at 4am because it felt so good. I did lay back down and got another hour or so of sleep and some nice time to just lay and rest, think and pray. Bo stayed up late hanging with Gideon and got more of his sleep in this morning while I was up hanging with Gideon. That brings up the question, ‘what does it mean to hang with Gideon?’ Well, since we can’t hold him right now because he’s under the bili light, we just stand at his bedside and touch his head. There is usually a nurse in here every hour doing something, trying to get labs, swapping monitor leads, changing his diaper, checking his leads, re-positiioning him, listening to his heart/lungs/tummy/etc, checking his pulse points, swapping blood pressure cuff sites. There is a lot they do for him and we participate in most of that by helpinng to hold or move him or his wires and cords but usually it’s just to have our hand on him to calm and settle him and hold his binkie in his mouth for him because he hasn’t figured out how to do that on his own yet. He sucks 1 or 2 times and get really excited about it then the binkie pops out and he gets really upset. It’s quite funny and adorable so we just hold it in for him. :) We prop it up with a blanket but he moves quite a bit and turns from side to side so that never lasts long.

How am I doing? I’m doing great! I did have a vaginal delivery and was a high risk patient for post birth hemorrhage so once they got me pulled up in the computer, they placed orders for pitocin and I was given pitocin pretty quickly after birth to help stop the bleeding. (Hint: that’s a funny part about the birth story… I delivered him prior to even being pulled up in the computer system and prior to making it to the labor & delivery room). My post birth bleeding has been fantastic, much less than with any other birth (Thank you God so I could be discharged in 7 hours after delivering) and pain is well controlled mostly with water because I forget to take Ibuprofen or a pain pill and it’s not bad enough to remind me that I could feel better if I took one.

Has he had surgery? No. The tentative plan is to have surgery on Friday. There are 2 surgical options we are exploring. Both are now major surgeries requiring a mid line sternomoty (open his chest) rather than the smaller surgery being able to be done by accessing the outside of the heart from his side and both will require him to be put on bypass which is a big bummer too. We thought he could have the 1 smaller, emergency surgery now then go on with life, take him home, let him grow and get strong then return in 4-6 months for the big surgery later but due to the complications with the veins, arteries, valves and anatomy of his heart, that’s no longer an option. We learned a lot after the cardiac conference they had yesterday and spent quite a while speaking with one of the cardiologists in our room.

What’s next? We are waiting to meet with the surgeon. His surgeon is the Chief of Pediatric Cardiovascular Surgery and Co-director of the heart center at Seattle Chidrens, Dr Johathan Chen: http://www.seattlechildrens.org/medical-staff/jonathan-michael-chen/ We have been told he is the best of the best, we are going to love him and feel so comfortable with him, be reassured by him and are so lucky to have him. We pray all of this is true as soon as we meet him. So, we are on post at the hospital awaiting a meeting with him. We were hoping to meet him last night after the cardiac conference but didn’t get a chance to so we hoped he would stop in this morning before he got started with his day but his day started early with surgery and since he’s a pediatric cardiothoracic surgeon, there pretty much is no ‘quick’ surgery so we have absolutely no idea when he will be available to meet with us and we are staying put right where we are until we get to talk to him face to face.

Surgery is tentatively scheduled for Friday. Gideon can’t eat until after surgery so he is hungry and cranky. He forcefully shoves his fists in his mouth and tries to suck on his hands but just gets frustrated. Hence all the time we stand at his bedside holding his binkie in for him, it’s very soothing and calming for him right now and it’s the only thing we can do so that’s what we do. He is getting nutrition and fluids both via IV, he has continued to poop meconium and has multiple wet diapers per day so we are thankful for that. Especially since the nurses change his diapers LOL :)

His hematocrit/hemoglobin have been at critically high levels nearly requiring a partial blood transfusion with saline. The goal is to get him around 60. They are required to transfuse at 75. Yesterday morning he was at 71.5 so they added extra fluids to him hoping that would help lower his levels. We threw a huge party last night when his levels came back at 60 after the draw. I got a little sad this morning when his level was rising back up again and made it too 65. They are increasing his fluids during the day today and will increase fluid and nutrition tonight when they hang his new bag of nutrition so hopefully, his next check will be better.

His blood: it’s thick. like the consistency of elmers glue thick. This is a big risk factor for many different things and will get the surgery postponed if it doesn’t improve. He doesn’t have good circulation to his whole body with blood the consistency of glue. Add to that the fact that one of the anomolies of his heart is a narrowing of the aorta that supplies blood to the lower portion of his heart and that’s just a double whammy for poor circulation for him from his chest down to the rest of his body. That is why he can’t eat, he doesn’t have enough blood flow to his gut to process nutrients through his tummy so they are going into his central line instead. When he gets fussy and angry and his respiratory rate goes up, his O2 saturation goes down and his fingers and toes turn a pretty dark shade of purple. He will also get cold to the touch on his extremeties because of poor circulation. Getting and keeping his hematocrit down will help this. Surgery will fix the rest of it.

His bilirubin is high. We don’t know what it is because, due to the hematocrit problem, they are unable to get a sample of blood to test. The blood hemolyzes (sp?) meaning his red blood cells burst and stuff oozes and mixes that’s not supposed too as soon as it is drawn and they can’t get a result from the test. Either that or the blood just clots and they can’t test that either. So we don’t even know what his bilirubin is now, they tried to check last night and this morning and were unsuccessful so they will wait until his draw tonight to check again. We’re praying it will be reduced quite a bit.

Respiratory Status: He is no longer on any O2 at all. His nasal cannula is off his face and they will remove his stickers from his face if he tolerates that well all day, tonight when he gets his bath. His respiratory rate fluctuates quite a bit which means his O2 sats fluctuate quite a bit which is a bit scary. Sometimes he has to work to breathe, sometimes he is just chill, calm and highly satting which is fantastic. Not being on any O2 at all is a big blessing. We are so thankful he is strong enough to do that on his own, especially with the medication he is on (Prostaglandins) that keep a duct open in his heart which is why he has perfusion to his lower 1/2 of his body right now. That medication can cause patients to literally forget to breathe and they stop breathing so he was initially put on high flow O2 with the medication to stimulate his respiratory tract and make him remember to breathe so it’s awesome he doesn’t need that and can breathe on his own adequately.

My eyes are starting to cross. I can’t think of any other questions I have received that have been unanswered at this point yet. I have so many more stories to tell. The birth story, the story of the sweet angel gal next door who God used to bless our hearts in a MIGHTY way, the blessings upon blessing that just keep getting stacked in our lap by all of you, the staff here, and how God orchestrates everything to meet our needs. We are so blessed and we are so thankful and so grateful and we are still in a scary place with our little man and there are so many unknowns at this point and all of this medical stuff can be so scary and disheartening sometimes. But we know that God loves Gideon more than we even can and we love him more than we can imagine so we are thankful for that. The social worker today asked me why we chose the name we did and we told her because we knew he was being born to battle and Gideon means warrior and God provided for Gideon in the bible, had his back, took care of him, rose him above his circumstances to make him a mighty warrior for God and that’s who we are calling our little Gideon to be. A might warrior for God who overcomes his circumstances by the grace and power of God. She said this is the 2nd Gideon she has ever met and the other one was named that for the exact same reason. So sweet.

How to help. A friend has generously set up a paypal donation link for us to help with costs. We’ve been in the hospital for 4 days now, Bo has driven back and forth a bit, we are buying food, whether it be at the grocery store to eat prepared here or from the cafeteria or even just the starbucks downstairs. People have offered to send flowers or meals to the hospital but we can’t have any of those. Gideon is in the Cardiac Intensive Care Unit, they are sterile rooms (we learned last night that they even do surgery right in these rooms in emergency situations) so they have to keep them sterile. No food or drink, no balloons, no flowers or plants, none of that. There is a family lounge/kitchen where we have a small shelf to store food and a small space in a fridge to store food as well and there is a microwave we have access to so we can have small amounts of food in the family lounge. I thought we could use gift cards to gas stations or grocery stores to buy food/gas/groceries or local restaurants to eat while we’re here but #1 – we have no idea what gas stations or food places are around, #2 – we don’t know if or when we will leave the hospital because we always seem to be waiting to talk to someone, the attending, the fellow, the cardiologist, the surgeon, we have a lot of questions regarding his treatment and care and they all want to check in with us as well so we stay here to make ourselves available for those meetings since the doctors and surgeons are all so busy. All of the intensive care units at seattle childrens, we were told this morning, are on divert for new patients meaning the NICU, PICU & CICU (neonatal, pediatric & cardiac intenstive care units) are not accepting new patients and turning patients away from the hospital because all of their rooms here are full. They can not accept any more patients because there is no where to put them. So we understand how busy the doctors and staff are and will stay and wait until they have time to get to us to discuss our questions and their plans and appreciate all the time that they do give us when they are available. All that to say, my friend set up the paypal link for us so we get 100% of the funds with no fees of any sort directly to our bank account and can use our debit card to grab a coffee at starbucks downstairs or grab a meal at the cafeteria or get a tank of gas as we drive to and from the hospital. That way no one has to leave their house to go drive and buy us something, we get a note when $$ has been donated and can set that money aside for hospital related costs. I did receive some nursing mom vouchers today, since Gideon is their patient and I am supposedly providing all his meals for him (I am pumping, they are just delayed getting to him) I qualify for some free meals here as the patient would normally qualify for some meals. So we received some vouchers for me to get some free meals this morning which is great. We have no idea how long we will be here but it should be at least another week, probably closer to 2 or 3. We are going to start having 1 of us at home most of the time so the kids can be at home and have their parents, continue home schooling, be in their environment, my parents can have a break, etc. and so we can arrange child care for when we really need it like surgery day, the day or 2 or 3 or 4 post op when he is the most critical and we both want to be here again.

Here is the post my friend made about the donation site:
As many of you know, Kari and Bo Bradshaw welcomed a darling baby boy, Gideon Robert on Sunday. Although a known cardiac anomaly was diagnosed prior to birth, an additional one presented itself hours after his birth. Baby Gideon was transferred to Seattle Children’s Hospital where he is awaiting heart surgery. Several people have asked how they can help? Kari and Bo are the first to recognize the miracle of life and to give their gratitude to God for this blessing. We can ease the financial burden while we await additional ways to serve this incredible family. They are most in need of funds to supplement the cost of food from the hospital cafeteria as well as the cost of gas as they travel to and from the hospital each day. Of course, medical bills also start to accumulate and one has enough to worry about in caring for the needs of a medically fragile newborn without worrying about bills. They are not ones to ask for help, but sincerely would appreciate a small donation at this challenging time. (Thank you for your generosity!!).

Current prayers: Hematocrit to reduce, Bilirubin to reduce, ease of breathing and good O2 saturation, a meeting with the surgeon soon and peace of mind with our decision regarding which surgery we go with, continued rest for us all here, our 3 big boys and their caregivers, healing for Gideon and I, I think that’s about it for now.

The pictures posted here are from today.

Blessings,
The Bradshaw Crew – Kari