Author: Kari

Gideon had a good day today. He trained with his first ever bottle. *sob* mama missed it. But Bo said he did great, he took 10 ml by bottle and they are going to continue bottle feeding him 10 ml 3x per day and see how he does. This is very exciting! Hopefully he will start getting fat soon!   :)

He tends to be very serious and thinks a lot. It’s a wonder what’s going on inside that mind of his. But look at his sternotomy scar, it’s almost all healed up! That’s just super glue on top of it, they put that on it when they close him up and that’s all they put on. I’ll of course oil it when the superglue is all gone but for now, he gets whatever they give him :)
Eating is hard work …. makes for a tired baby. LOL. Maybe I’ll get an updated weight on him tomorrow and see if he’s gaining with all that he’s been eating. He is down to 2L in his positive pressure cannula (it’s different than just a nasal cannula like I’m used to being an EMT, I didn’t know that originally) so that’s been cut in half and he is doing well. His Milrinone that we need him to get off of was reduced again tonight so we pray that the continued weaning of that goes well throughout the night and he remains stable. Apparently he just did a big poop again, he really does need to get bigger diapers so he stops blowing them all out. He is still a tiny guy but he is certainly too big for preemie diapers already. Who knows, maybe he will be big enough for newborn clothes this week! Not that he is allowed to wear clothes yet becuase he has too many tubes and wires coming out of him but soon enough!

I feel like this picture below gives a good perspective of his size. That’s Bo’s hand feeding him from a small bottle and his tiny little head on his 5 lb body. He is still really little even though the pictures I show make him look like a normal size baby, he isn’t quite there yet. Soon enough!

As for mama, I’ve had a rough day. I spent most of the day crying for the 3 babies who have been lost in our hallway in a week. I was down about the surgery for the boy down the hall too, not feeling very optomistic about that either and was so relieved to hear that so far, it seems to be a success. I’ll keep  praying for a miracle for him, it’s so hard to pray for because the only thing that will save his life is a heart transplant, but how do you pray that a heart becomes availble for him? Such a hard prayer to pray… But God has a plan and I don’t understand it, I just have to trust Him and share my cares and concerns with Him and ask Him to heal my fragile mama heart for all that goes on around and with us.

It’s strange walking into the family lounge sometimes. There is 1 family lounge that we all share, the CICU (cardiac ICU), PICU (Pediatric ICU) & NICU (Neonatal ICU) so you watch people walk in, survey the room, look to see who’s in there and what mental state they appear to be in before you ask anyone anything. The standard greeting in there is “How’s your baby today?” But you can only ask at certain times in case like last week, I walked in and it appeared the family was planning a funeral so I didn’t walk up in a positive way and ask how their baby was doing that day. We read the room and feel the atmosphere and sometimes we just nod our head or give a sincere look and sit in silence with others while praying for what we are all going through together that’s so different yet so similar.

There were lots  more specific updates about Gideon but I’m tired and don’t remember all the specifics anymore. All in all, he had a good day. Continued prayers for weaning off the Milrinone, weaning off the air, weaning off the Lasix, improved cardiac output, improved kidney function and weight gain. And so many thanks to God and all of you for the prayers that we are seeing be answered everyday when he makes progression in a positive direction. Bo had the chance to speak with his surgeon both yesterday and today which was very reassuring to hear his assesment of Gideon. He just says that Gideon is a little guy, he needs more time to heal than other babies who have gone through this who are bigger and stronger. We are headed in the right direction, just on Gideons timeline, not the standard timeline :) Gideon also needs to ‘grow into’ his pulmonary band they put inside his pulmonary artery. That band has to last him 6 months while he grows until he can have his big surgery to repair all the missing stuff on the inside of his heart so they made the band a good size for him to be able to grow into it over the course of the next 6 months and for it not to get too small for him which means right now, it’s pretty big and he’s over oxygenating (hard to imagine how that can even happen) so that’s something they are watching closely as well. His surgeon is happy with the size and function of the band and think it will fit him perfectly for 6 months, it’s just going to take him a bit of time to grow into. Maybe I’ll explain his 2 different heart surgeries in another blog post soon, I know tons of people have questions about what he had done and what he still needs to have done that will be scheduled in 4-6 months. Not right now, I need to go make him some milk and sleep snuggling the biggest little man who is already in my spot heating up my bed for me. That would be Elijah :)

Thank you for the continued prayers! Don’t forget to give blood! :)

** Update 6:45 pm ** The “boy down the hall” should be returning to his room sometime tonight! So far, the total artificial heart is in place and is pumping for him! They hope to be able to close him up and have him back in the CICU tonight to wait for his spot on the transplant list! THANK YOU for the prayers. Like Gideon, he used A LOT of blood, please consider donating blood if you get a chance. These kiddos need all the help they can get! Please continue to pray for him  and Gideon as well, Gideon had a good day today, I hope to be able to update soon!

I have lots of updates to post but no time to do it right now.  Gideon is doing well.

This mornings prayer is for “the boy down the hall.” He had a bad night last night and is heading into surgery RIGHT NOW for them to try a surgery that’s never been done at Seattle Childrens before. This boy will be getting a “complete artificial heart” which means they are replacing his ventricles with a pump to do the work of his heart. This boy is in dire need of your prayers for a successful surgery and no ill effects from all of the hiccups he had last night. This boy is on the transplant list and they were hoping this surgery would give him  the time they need to find a donor heart to save his life.  This is literally his very last resort and they were discussing it and starting to prepare, but after his night he had last night, it’s become emergent that they try this to try to save his life.  Please lift him and his family up today.

I will post our updates when I get a chance. Nothing dire for us, for the most part, it’s  all good news on our front.

Well, apparently Gideon had a bit of a fussy night last night. He is pretty unpredictable with his moods, either he is completely chill and pretty sleepy or he can be a crank pot and you just never know when he will be which way.

The occupational therapist came in to work with Bo this morning on binkie training again and set Gideon up with 10 ml of food which he promptly ate in it’s entirety. He is training well with the binkie and getting much better at the suck/swallow/breathe reflex and not coughing as much up into his nose as he did before which is great. If he continues to do well today, they may try to bottle train him tomorrow. They will cut back on his NG tube feeds as he increases to get more amd more by mouth which is great as well. They are playing a very delicate balancing game with weaning the Milrinone (the cardiac drug we have to get off of to get out of Intensive Care), adding the Captopril (different cardiac drug they are using to wean him from the Milrinone) and balancing his fluid intake, output and Lasix doses while also monitoring his kidney function which is greatly affected by all of this. His kidney function is declining with all of this but not to critical levels yet so they are just teetering trying to keep his kidneys going while his heart improves. It will probably take 4-5 more days to wean off the Milrinone if all goes perfectly then he has to maintain a bit before we are cleared to get out of Intenstive Care and onto “the floor.” I can’t believe he ate 10 ml on his own though, just last week he couldn’t even choke down 1 ml because he didn’t know how to do it so he is making great progress which is encouraging.

Of course, eating  huge meal like that is exhausting and he promptly went right back to sleep. Hopefully he is getting chubby & strong while he’s doing all this eating and sleeping. Apparently he didn’t get a bath last night so maybe he will sleep a bit better tonight if Bo helps them give him a bath when night shift comes on before his night time snuggles so he can eat, poop, have a bath, have some snuggles and settle in to rest for the night. And look a bit cleaner, he looks like quite a filthy mess with dry skin and milk all over his face. LOL.

When he came back from his surgery, he had a dedicated nurse who basically just posted up in our room 24/7. He has since graduated needing that level of care and his nurse is now split with the room next door so they sit right outside our door in a nook looking into the window of both our room and the little boy next door. Sadly, the little boy next door is not quite as stable and requires quite a bit much more care than Gideon does, Gideon is fairly stable and his alarms don’t bing and bong as often and when they do, it’s usually because he moved and something came lose and it will go back in range in a few seconds if he settles or scoots or something so the nurses usually only come in for their vitals checks, IV flushes, medication administration, monitor swaps, stuff like that so he can actually be left alone completely for an hour or 2 at a time if he’s resting now which is nice.  Some of the nurses really seem to care for the patient, for how he looks and what I want and others seem to just want to check off the boxes on their checklist and do the required vitals checks and nothing more so I like the nurses who actually treat him and work with me to take care of him the way I want them to.  Like giving him a bath. It is a 2-3 person job because he still has so many leads and wires and IV’s that he has stuff hanging off of him everywhere that can’t get wet so if we have 2 nurses, 1 of them holds him up, 1 has water with a washcloth and I’ll soap and scrub him up.  if it’s just 2 of us, usually I hold him up while they scrub him down with a soapy washcloth because they are far more comfortable with scrubbing off all the peeling skin than I am. Some of the nurses look at his skin and say how he needs lotion and they will order lotion for him (I have lotion that I add Frankincense oil to and usually just use that, I just have to get permission first just in case) but it’s so nice for them to actually look at him as a little person and see the goop in his eyes and want to clean it out for him or the crusty milk all over his face and want to wipe it off rather than just look at him like a lump of nothing that needs a arm & leg blood pressure taken and an o2 sat monitor swapped and new leads swapped out, check it off the list and head out of the room. Of course, that’s all stuff that Bo and I should do for him as well but if it’s been a few hours and we haven’t done that or Bo doesn’t see it because he doesn’t know about all of that stuff, it’s nice for the nurse to either do it or bring it up so we can do it just to make him more comfortable.

As for the big boys and I, we are doing good today. We are detoxying from electronics today and haven’t had any video game or Ipad time today. We played Uno, built a fort, played hide and seek, did a little school stuff, colored, played chase, cleaned up and have just had a nice, chill day inside. I woke them all up super early in hopes of getting them off to their first day of school but changed my mind and decided to keep them home instead. I’m too nervous about exposing them to all the germs out in the world that we just can not have in our house right now so we are keeping our germs to ourselves and avoiding germs from others for now. I certainly can’t get sick again because we can’t risk anything with Gideon. I just put on a quick show for them to sit down and write this and make them lunch before we all lay down for naps in a bit. They really need hair cuts and love bath time but we’ll see just how motivated I am tonight if we do any of that stuff. :) A neighbor is bringing us all dinner so I don’t have to worry about that. Last night we had Costco pre-made chicken tortilla soup, that was SPICY! I’m shocked the kids at it! But they did, good thing for me I had a salad to eat because it was too hot for me.

Prayer requests:
– Improved kidney function & cardiac output for Gideon
– Continued improvement with feedings & attempt at bottle training tomorrow (how sad is it that I’ll miss my babies first ever bottle? *sob* hahaha) :)
– Another successful night of decreasing the Milrinone
– Good rest & healing for all 6 of us. I know Gideon didn’t sleep that great last night which means Bo didn’t sleep that great, we all need rest and healing!
– An AWESOME night nurse who wants to care for him well and will do a bath and help Bo feed him and help them snuggle, etc.

We can’t thank you enouhg for the continued prayers, support & encouragement! Much love & many blessings!

My main man! He had a chubby day today! Not only did they increase the volume of his NG tube feeds, we re-started binkie training again today (oral feeds through a binkie) and he did FANTASTIC!!! Last week the goal was to get him to eat 3ml 3-4 times per day. Well, because it was all new to him, he never accomplished that. Then with his hiccup we had Saturday morning, that took him completely out of binkie training opportunities for the whole weekend and OT wasn’t available to come back and re evaluate him yesterday so he has had quite a bit of time off. What binkie training is, is using a pacifier that’s connected to a feeding tube and a syringe at the end to get babies to take oral feeds. He sucks on the pacifier and I push milk through the syringe and feeding tube into the back of his mouth then he has to figure out how to swallow that, while still breathing and not choking. He’s just over 2 weeks old now and has never had oral feeds (except about 30 min right after birth) so he doesn’t  have the natural reflex of it all since he was never given the opportunity to let nature take it’s course after he was born. So last week, we tried with 3 ml, I was successful once at getting 2 ml into him but that was so exhausting for him, he just couldn’t get that last 1ml in. When I got to try at the end of last week, he took 2 ml once, then 1 more later and .5 after that. But it’s very exhausting for him to try to figure the whole thing out and swallowing alone is aerobic for him. He will literally lose weight while eating because it’s such a workout for him to suck, swallow, breathe & digest, he burns more calories than he takes in doing that. Don’t we all wish we had that problem? Anyways, this morning, she gave me a 5 ml syringe and I chuckled to myself thinking there was no way he would down a whole 5 ml when his NG tube feeds just got increased a few hours ago as well so his tummy should be full already but I put the binkie in his mouth and he sucked and the plunger on the syringe went down on it’s own! I didn’t even have to push! With just a tiny bit of pressure, he sucked down 4 ml of  milk basically on his own! The last ml he had a little help with then he went right to sleep. 4 hours later, Bo was there and fed him again and he did the exact same thing. Then 2 more times tonight so he took 20 ml of milk by mouth today LIKE A CHAMP in addition to all of his NG tube feeds. This is a big milestone! He’s still only 5 lbs and they are concerned that he’s not gaining any weight even though he’s getting 24/7 feeds from his NG tube and they are fortifying my milk with lots of extra calories and protein to fatten him up. Hopefully yesterday and today were growth spurt days for him because he slept most of the day and all night long as well and ate a TON today so this may be the start of his weight/strength gaining which would be fantastic. That’s the prayer!

Today was a strange day for me. It was good to see Bo again when he got to the hospital and we had a chance to chat for a few minutes before I headed to the grocery store and home. Again, I realized just how tired I was drifting between the lines heading down I5 trying to stay awake. Walking through Costco felt like being in a bad dream I couldn’t figure out. I need food in the house but I don’t belong at the grocery store, I belong at the hospital with my baby. But I wanted to come home and spend some time with the bigs and maybe get them to their first day of co-op tomorrow and apparently, I need rest more than I realized since I didn’t realize I was a walking zombie again just living the hospital life. I picked up some buckets of soup for the kids and some pre made salad kits for me, ran to fred meyer and headed home.

The kids need some structure. It’s been survival mode for them for 2 weeks of free for all, anything goes, just make it through the day and their attitudes are certainly showing the lack of structure, routine and training they have received so we have a lot of work to do to get back on track with training, school work, getting back into a routine and rhythm again. They have been loved on well but no one wants to discipline or parent someone elses kids or grandkids so … we just have some work to do :)  It’s so good to be home with them though, I miss them so much but it’s also so hard to be gone from Gideon. I held all my big boys tonight but I didn’t get to hold him and rock him and sing to him and have him fall asleep in my arms like we do every night now. So sad. I’ll be back soon enough though.

Prayers:
– NIRS readings. They still need to improve
– Some of his labs need improving
– Weaning from Milrinone (the cardiac drug) – it’s going good so far this time
– Weight gain
– Improved cardiac output

Thank you!!! <3

What a great night! Even with the hiccup of the 4am EKG and extra lab draw and the sounds of doctors voices in my room at 2, 4 & 6 am which is TERRIFYING, we are doing good. Both Gideon and I slept the majority of the night and the EKG and lab results were both good! He is throwing some ‘PAC’s’ (premature atrial contractions) but they seem to be benign and everything else with his heart is looking good so they are just going to monitor that and make sure it doesn’t change.

They started weaning him off of the cardiac medication last night that he needs to get off and went down from .5 to .4 and there was no change with him which is fantastic. The last 5-6 times we have tried to wean him off, he didn’t tolerate even that small of a switch so apparently the new cardiac drug they have him on for the wean is doing it’s work.

They increased his feeds (via NG tube) today because he hasn’t grown at all since he’s  been here, he is still 5 lbs 2 oz and he needs to GROW to get healthy so the increase calories and volume alternately every other day. Today he gets more volume, tomorrow he gets added calories/protein in his milk and they will keep increasing and hope he eats well, rests well and has a growth spurt. They think he may be growing right now because he slept most of the day yesterday and all night long, he had increased feeds yesterday and he took 5 ml by mouth this morning when we did ‘binkie training’ and he did great then went right back to sleep. They like to see him eat a lot and sleep a lot so I guess that’s a good thing!

It’s a slow process but we are taking baby steps in the right direction. Thank you for the continued prayers & encouragement, please keep them coming especially as we switch out and I head home to be with the big boys and Bo comes up here to be with Gideon for a few days. The days up here are getting busier now that we (the parents – not the nurses) get to feed him 4x per day and we are encouraged to snuggle him at least 2x per day. I always feel so bad for the nurses because it takes nearly a half hour to get him out of his bassinet to snuggle for a bit and about 45 min to get him settled back in and unwound from all the cords, wires & cables but they are so kind about it, the still encourage us to do that even though it adds a ton of work for them. Between feeding and snuggling, the nurses don’t even have time to do all their safety checks and vitals every 2 hours

Specific prayers:

• Gideons cardiac output improves
• His NIRS scores improve
• He gets FAT
• Complete healing for the whole family, we need to stay rested, healthy & well so please pray for that!

THANK YOU!!!!

I had a few minutes so I thought I would post a quick update. Shift change went quick for the nurses tonight so Gideon is about to get a quick bath, a sterile dressing change then we get to snuggle before bed. We already had some good snuggles today but we get more tonight!

Today was very low key. We snuggled some this morning and he napped a lot throughout the day. I tried to keep him awake so he would sleep at night but they frown on that in here and say to let him rest, heal & grow when he is willing so I did. But he has a procedure tonight (the sterile dressing change) so he will be awake for a while for that.

This is a rough place to be … it wears on you mentally more than you realize. I’m pretty much always on the verge of tears for someone or something. I was visiting with another ‘cardiac mom’ today talking about the code we heard. There are constantly pages going out for a rapid response team or a medical team or a this team or a that team. Today one of them was very close to home, just down the hall and I found out later that a baby had been ‘called home to Heaven’ as his mother put it. Not ok. That’s just not ok. He was just a baby. He had been here a month, he was improving everyday and almost ready to head back out to “the floor” which is where you go after you’re released from Intensive Care and he just died today instead. The mom I was talking with had also been previously released to “the floor” when her baby had a hiccup and ended back in the CICU again. We together were talking with another mom whose baby was released and went home, 3 days later, he stopped breathing and they have been back now for I don’t even know how long. NOT OK. These stories are terrifying and scary and make me so sad for all the mamas go through in here. It wears on my heart and my mind but I’ve had the opportunity to talk a lot about the goodness of God and his promises and what His word says and how I cling to that when I’m scared & afraid because it’s all I can do so I don’t literally go crazy.

So no new updates, no real progress today, he started on his new cardiac med so tomorrow he will probably start weaninng from his other med. We certainly need big prayers for the transition of medications, his NIRS readings & his labs,

They did reduce his air flow today to 3L and he has done just fine with that.

Occupational therapy didn’t show up today so we didn’t get to practice binkie training today but that will resume tomorrow as long as he is still stable and well.

Time to go help with his bath & snuggle then get to bed! Hopefully we can be done with all that by 10 and get some good sleep tonight! Thanks for the prayers!

WE SLEPT!!!! Thank goodness me! I needed sleep bad. I was getting to a bad place. Gideon and I both slept pretty well for most of the night so I feel like a new person with a great outlook on the day!

They tried to wean him from his cardiac drug last night which he again did not tolerate so that’s a bummer. But, they came up with a new plan this morning to start a new drug to try to help wean him off of it so hopefully over the course of the next few days as he increases the dose of the new drug, he can decrease the dose of the old drug and get off that one completely which needs to be done before we can leave the Intensive Care Unit.

They have increased the calories in his milk again, he is getting breastmilk only but they are fortifyig it with extra protein and calories so he can try to put on some weight. We get to try binkie training (oral feeding) again today after taking 2 days off because he was having a rough time.

They hope to reduce his positive pressure air via the nasal cannula today as well and we pray that goes well.

They have weaned a bit more of his medications and have almost everything switched to being taken by mouth rather than via IV so hopefully, some of his lines can start coming out in the next few days as well as that progresses.

Praise reports:
– We slept!
– He doesn’t seem as fussy today as he was yesterday

Prayer requests:
– This new drug will work like a miracle to help get him off the old drug, he will adjust well and his cardiac output will impove greatly to help weaning.
– A comfortable day. Hopefully no fussiness, just a chill, happy, awake day so we can have a chill, happy, asleep night.
– One of his lab values is still a bit too high, we need that # to come down.

THANK YOU THANK YOU THANK YOU for the continued prayer support and encouragement. I fell asleep last night reading Psalm 4:8 over and over and over from the commment on the blog that was posted last night which gave me great comfort. I read every comment here and on the FB page as well so Im sorry I don’t reply to them all but I do certainly read them!

Just a quick update tonight…

Praise Reports:
– His Echo this morning came back good! This is a HUGE relief. The surgery has still been deemed a successful surgery with no complications, it just proves that Gideon needs more time to heal and grow strong but nothing has gone wrong from a surgical standpoint. He’s just very small, fragile & weak and needs more time, prayers & strength.
– His labs are still improving. They need to get better still but we’re headed in the right direction.
– I got a shower and a nap this afternoon! We had another sleepless night last night which made for a rough day today. He has been uncharacteristically cranky today, so much so he earned himself some rectal tylenol and a bolus of Morphine.  He doesn’t appear to be in pain, he is just cranky and wants someone to talk to. He does pretty good if I’m sitting at his bedside talking to him holding his binkie in for him (I’ve had to get up to soothe him 3x already in the 2 minutes I’ve taken to write this blog).

Prayer Requests:
– Strength & stability for Gideon
– Improved cardiac output for Gideon & successful step 1 of weaning off the cardiac drug tonight. We are stuck in the ICU until he is off this cardiac drug which we have attempted to wean off of at least 4-5 times already and he has not tolerated. We need to get him off this drug and STRONG and stable on his own before we can take any next steps.
– Comfort for Gideon
– Peace of mind & heart for mama. Also continued improved health.
– Rest for Gideon and mama tonight. We NEED to sleep tonight. Mama is on the brink again after a few sleepless nights and that’s not a good place for me to be.

People still ask how they can help. There are a few ways:

1. Pray! We need so many prayers, I try to update very specific prayer requests often, sometimes (like today) the day just gets away from me though and I don’t have a chance to update.

2. Donate blood. Strangers saved Gideons life with all the blood he used during and after surgery. I’m so thankful for the blood bank and all the people who donate to it to save kids lives like his.

3. Meal train – many people have asked about this. It’s in the works! We will have one set up in the very near future for whomever is at home with the kiddos to help ease the load of single parenting 3 small kiddos. We just aren’t quite ready to get that started yet so be on the lookout if you’ve been chomping at the bit to bring us a meal, THANK YOU! You will have an opportunity to do that in the near future, we just aren’t quite ready for that

3. Paypal:

As many of you know, Kari and Bo Bradshaw welcomed a darling baby boy, Gideon Robert on Sunday 1/14. 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 had  heart surgery on Friday 1/19. 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!!).

Prayer Requests:
A great echocardiogram in the morning
Excellent sleep for everyone tonight
Continued strength and improvement for Gideon
Healing, rest & peace for mama

Gideon had a great day today after last night and this mornings debacles. He had a blood transfusion, added some extra medication and got his nasal cannula back at 4L on room air humidified. After a couple days of asking and being denied, I finally convinced someone to do a saline flush of his nose to open his airway and what a HUGE relief that was when they did it and cleared him out! He had some nasty, crusty gunk in there that had blocked off most of his airway which I believe led to many of his problems last night/this morning. But that’s been dealt with now and he is breathing easy, easier actually than ever before with the positive pressure from the cannula. Statistically speaking, he has had his best day with his heart rate, blood pressure, respiratory rate and NIRS readings, sadly, it required extra medication and positive pressure air to get him to that place. He has been a very good boy today though and been chill and rested and got some lines changed and some things cleaned up, I got to lotion him up pretty good as well and dumped a bunch of frankincense in the lotion for added benefits for him and all the nurses want the frankincense because it smells so good so everyone likes to smell him now. We get lots of nurse visitors because everyone thinks he is so cute they just like to look at him and talk to him, I think he is the smallest baby in the unit being only 5 lbs, most small babies like him are in the NICU not the CICU so he gets doted on pretty well here.

My friend asked me the other day if I’ve got much scrapbooking done while I’ve been here. Ha. Get something done? Seriously? Well, I suppose to anyone who doesn’t know what goes on here, it would seem like all I have is endless time to do whatever I want to do. That is not the case at all though. This picture below is how I spend the majority of my time here. 1 hand on his bink, the other hand on his head. That is about all I can do to calm, comfort and soothe him  so when he is awake, this is where I post. I talk to him, sing to him, play music on my phone and just hang out and be with him. When they do procedures, vitals, checks, etc, this is where I am to comfort and soothe him. So I spend the majority of my day and my night just like this, hand on head, hand on bink talking to my man. When I’m not doing that, I’m either pumping milk or cleaning the milk pump supplies because I should be pumping at least 6 times per day which means washing it all 6 times per day as well or making him milk. I do that by feeding myself :) lol. I do try to get a small, healthy snack for breakfast, usually a salad for lunch and I’ll order something from the kitchen for dinner. The other night I ordered a burrito bowl and at all the meat and salsa and tossed the rice. It was delicious. Tonight, my mother in law brought me a big salad I ate for lunch and saved leftovers for dinner and just ate the goulash she brought me for dinner, the other night my mom brought up a bowl of soup for me for dinner so I had that. I don’t frequent the cafeteria but I do order from the kitchen which is their room service menu, I just have to go pick it up downstairs from the pick up window as we’re in intensive care and there is no food allowed in here, I have to get it and eat it in the family lounge.

This book right here that was given to me by a dear friend has literally kept me alive during my stay here. I get so terrified at night when the alarms all go off and they page for the doctors and people fill the room discussing what to do with him that I can barely even breathe. I lay in my bed still and quiet holding my breath trying to make out what they are all saying just on the other side of the curtain completely and totally paralyzed and terrified in fear. Then I remember my good book, crack open 1 eye and read any words I can off of any page in this book in the dark to re-ground myself and focus on the truth rather than the paralyzing fear and I often read this out loud to Gideon as well while I’m standing over him. Someday, maybe I’ll memorize some of this stuff so I don’t have to read through 1 half open eye in the dark in the middle of the night… lol. For now, I do what I gotta do to make it through the scary times.

Chillin with my man

They actually do procedures and operations in these ICU rooms (hence the no food/drink allowed rule) and made me mask up today to sit on my bed in the room during a sterile procedure they did changing his dressing on his arterial line. I’m a nerd, I know.
   

Hospital life is different than normal life, that’s for sure! When I originally packed my hospital bag, I packed plenty of things for Gideon to wear and his blanket to have in the car seat on the way home, socks and mittens, cute outfits, etc and I packed clothing for myself expecting to be a patient admitted into the hospital with him as I was scheduled to be on hemorrhage watch for 3-4 days while he was on cardiac watch so we could stay together in the hospital. I had NOT planned on being an outpatient and was not prepared for that ambulance transport the night he was born up to childrens and becoming an outpatient just 7 short hours after giving birth to him. When I got the chance to go home and re-pack a day or 2 later, I took out all of Gideons stuff (he didn’t get clothes or blankets at the time – he still doesn’t get any clothes) and packed myself stuff to live as an outpatient visitor at the hospital. I’ve since had a chance to go back home 1 more time and re-do it all again since I’ve learned more after being here for more time now. They have shower facilities, 2 to chose from, 1 set doesn’t  have warm water, the other set has scalding, burning hot water so I’ve learned which showers to use. I had packed my whole Young Living travel set that I bought specifically to have at the hospital after birth which I took back home and dropped off because I needed to minimize a lot of stuff. I’ve been using the foaming pump shampoo/soap on the shower wall since I got back because I took my own toilitries home except my deodorant and toothbrush.  Today I found a bar of soap  in the family resource center and did a little dance for REAL SOAP! Yes, I had the option of having my own real soap from home but I got rid of all non-essentials and since soap was provided in the shower, I left mine at home but I generally never use body wash, I prefer a bar of soap so this was quite the little blessing to find today. I had an awesome scalding hot shower with a real bar of soap this evening, it was FANTASTIC! I even did a load of laudry yesterday to wash the sweatshirt I’ve  been living in 24/7 which was nice as well! 
I started to write this post nearly 2 hours ago now and while it should have taken me 20 minutes, I’m still not done. The nurses had shift change so there was check in with his new nurse for the night as well as check out for his day nurse who is gone now. His night nurse wants to give him a bath and a spa treatment which is great, he desperately needs one. They let me lotion him today but I only got about 40% of him and he still has crusty stuff on him, his night nurse is very excited about the fresh, clean blankets she found for him and some yummy smelling shampoo so I’ll go dump more frankincense in it and help her give him a bath and spa for the next hour or 2. So much for going to bed early tonight! But if he has a nurse who wants to take good care of him, I’m all for it and will stay up all night long making him feel better!

It’s now been over 4 hours since I started this post… I had hoped to be in bed over 2 hours ago.. time FLIES at the hospital!

This is us about 30 min ago….

Ok, so yesterday was ‘stand still’ day and today, Gideon has deemed ‘backwards’ day. He had some hiccups throughout the night that have caused them to make it a resting day for him today rather than a forward progress day. He had a transfusion this morning which seems to have helped him out already and he just got a neti pot saline suction treatment that also helped out greatly. They have restarted his Lasix and he is now on high flow humidified room air for positive pressure ventilation because he was working pretty hard to breathe. His heart rate, NIRS readings & respiratory rate have all improved since making all of these changes. His goals for today are to remain stable with the assistance of lasix & positive pressure room air. Hopefully they will be able to reduce the rate of the air as he settles in for a great day so he won’t be needing so much support to sustain.

Prayers:
That his chest xray comes back clear & perfect
That his respiratory status improves. Less work of breathing, reduced but stable respiratory rate.
That his cardiac output improves.
For his comfort
That they are able to resume feeds via the NG tube. We won’t be feeding orally today because of his respiratory status unless he improves greatly throughout the day which I’m really hoping the saline suction will prove to have helped and achieve.

That’s a lot! Mama can use prayers for healing, peace of mind and heart & rest as well. It was a mildly restless night as he decides to do all his funny stuff between midnight and 6am so that pretty much cuts out the option to sleep between those times which is when I plan to get the most sleep. :) Please also pray for Bo with the big boys at home, it looks like a dreary day today so hopefully they have a fantastic day playing and enjoying each others company at home and there is just an abundance of joy and peace in our home.

Thank you for the prayers, encouragement & support!