Author: Kari

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!

I knew this morning that I was having a hormonal/emotional day. It was a good day this morning but I was extra sensitive, on  the verge of tears most of the day for no reason at all and very tired. I should have told Bo so he could be on high alert for the maniac that was to appear this evening because he probably would have seen it coming. But I didn’t so he had no idea. We had a relatively great day. We got some extra stuff done, more than just feeding the kids and cleaning only what we needed to use for the day like we have been doing these past few days since we got home from the hospital. We ate meals ourselves today, we (Bo) got our bedroom all cleaned out, moved some furniture, I made a run to starbucks to get us a coffee treat and get a breather while Gideon was resting. A beloved friend who I love and never get to see brought us a ton of food, gifts for the kids and the mama encouragement that she has a special way of sharing that always makes you feel better about yourself when you’re with her. Another friend dropped off more gifts and freezer meals that families from our co-op made for us. But then tonight I snapped. I am exhausted, it was loud, there was chaos and it all just became too much and I completely snapped. I threw myself a little fit and had a tantrum and behaved like an out of control toddler. The kids cried, I cried. Then I apologized to each of the kids individually and made somewhat of a forgiveness lesson out of the whole deal, about how mommy doesn’t deserve their forgiveness and it’s not ok how I behaved and they don’t deserve that and I’m so thankful that Jesus forgives us when we make mistakes and teaches us how to forgive one another so we can do the same and they were all too quick to forgive me and give me kisses and hugs. (run on sentence much? Oh well…) Then I went to talk to Bo and sob my eyes out about what a horrible example I am to my children and how it FEELS so awful the way I behaved because I would rather teach them grace and gentleness rather than humility and forgiveness though I know all are lessons that need to be learned. I just want to be a better example of grace and compassion so they learn to respond that way rather than snapping and throwing a tantrum.  Everyone tells me to lower my expectations for this stage of life. To dump things that are not essential priorities, to delegate things that are and to have more grace for myself and realize that too many episodes of Daniel tigers neighborhood or auto b good won’t completely wreck my kids and that I’m not going to totally trash Elijah’s entire education because he is 6 now and we haven’t done anything school related (with curriculum) for 4+ weeks now. I get it, I’m ok with that, I hear it in my mind but I don’t feel it in my heart. Then I look at this picture. Our very first picture of all 6 of us together and just cry at how blessed we are, how blessed I am to have these 5 men in my life, in my home, under our roof together and wonder when I will FEEL that in my heart through the day to day struggle of balancing and managing it all. Bo has stepped up a ton, he KILLED it today going above and beyond to help keep me afloat and even still, I lost it and couldn’t hang. Plus, it’s Valentines day. My parents dropped off a gift a few days ago that I forgot about until just now (kids are already in bed), another friend dropped off some candy for them that I also forgot about until just now, I got Bo nothing. Well, I did get him something very small that will be delivered on Friday but not a card for today and I’m the one who pushes to celebrate holidays and waste $$ on cards for each other and he got me the sweetest card from him and one from the kids and I didn’t even make the time to make him one with printer paper and crayons. Ugh. Add insult to injury. All that to say, it was an awesome day until I snapped but I still realize just how blessed we are. Medically, Gideon seems to be doing great. He got bumped to 4 hours between feeds at night last night and did great. He got increased to 30 minute pump feeds today and did great with that. He breastfed twice today and did awesome both times and took 30 ml by bottle one of his feedings which is the most he’s ever taken by mouth so that’s awesome as well. We see his pediatrician tomorrow for our ‘newborn’ visit with him and will get another weight then, his breathing has been great, his pulses are good, he poops way too much and sleeps great. Life is slowly coming back into Elijah’s eyes since it disappeared there for a while for the past month until times like tonight when I snap and crush his spirit in 1 second flat with some harsh words but it’s so good to see his eyes coming back. We are blessed. I may be an emotional train wreck tonight due to exhaustion, hormones, a mix of both, who knows, but I do realize that I have it pretty good here. I just hope it starts feeling like that soon so I can feel like we’ve got it handled. Right now, I think about Bo going back to work and it scares me. But I know I have tons of friends and family to help and while it’s hard to ask for help, I have and am so happy to receive it because it keeps us afloat. For the most part when I don’t snap and lose my marbles. LOL.

Prayers: For me to find my marbles. And get my heart in order.

For us all to stay healthy and continue making progress and improvements everyday with getting down a new normal and a healthy, happy routine, especially as Bo returns to work.

Continued weight gain for Gideon and cardiac/pulmonary health for him and a good doctors appointment tomorrow.

THANK YOU THANK YOU THANK YOU. I can’t say it enough. Really.

Whew! Our first outing with Gideon today. Our cardiologist unfortunately wasn’t available as soon as we needed an appointment so we had to see one of his partners in the Tacoma clinic, rather than the Federal Way clinic where we hope to have most of our appointments. It’s been so long since I’ve been out of the house with a newborn, I didn’t even remember what to pack and hadn’t planned on bringing a diaper bag. I’m glad i decided to at the last minute because the tiny backpack we have for his feeding pump isn’t big enough to hold much. I was pretty impressed, the only thing we forgot to bring with us were bags to put soiled diapers in so one of the nurses was kind enough to give us an extra lunch bag they store those up for in the clinic. Apparently Gideon gets anxiety poops too… LOL. At least I’ve pretty much learned how to change him now keeping him completely covered at all times. It’s never been difficult to do that before but the way we have to lift him to change him isn’t like normal kids where you just pick their feet up to load a diaper or wipe them, because of his sternum, we have to maneuver a little differently to protect his surgical site.

Our first round of good news today, HE GAINED WEIGHT! He is at 5.997 lbs now, growing very well, the doctor was pleased! When we left the hospital on Friday he was 5.73 lbs so he has gained 120 grams in 5 days.  GOOD BOY! The doctor even told us to extend his night time feedings from 3 hours to 4 hours since he’s doing so well so we can try to get a little bit of sleep at night. YAY!!!!!!! Thank you God for big and little blessings!

The doctor was unable to obtain good blood pressures from the BP cuff on the upper and lower extremities which is what they will be watching for most with Gideon. Because of the defect with his aortic arch, which they repaired surgically, there is concern about blood flowing well to his lower extremities so he got another echo cardiogram today to check the status of his aortic repair and pulmonary band. His cardiac output looks the same as it did in the hospital and the doctor was satisfied with it. He slept through the echo since he had a dry diaper and a full tummy. We even used his feeding pump while we were there today, the battery works! Lol. More BIG blessings! A good echo report.

We have to be seen monthly by the cardiology team between now and his appointment (if not more) and we were blessed yet again by being able to schedule his upcoming cardiology appointments with the doctor we love, trust & respect in the Federal Way clinic which is much closer to home for us at exactly the intervals we need to schedule them. Thank you God for working out the scheduling, the doctor and the facility all to bless us!

I still want to post another update about his condition specifically since I know it doesn’t all make sense but that will have to wait for another time. The easy way to put it is that his original heart condition that we knew was there before birth, is still there. He is far too small to repair that condition at this point, he needs to at least double his weight and they hope to get him to 5-6 months of age before he has his “big” heart surgery where they will literally open up his heart and re-construct the inside of his heart because a bunch of it is missing right now. The surgery that he had already had nothing to do with his original condition, that was for 2 completely different cardiac anomalies that were found immediately after birth. So we still have a very long road ahead of us with healing up from this surgery, getting strong & healthy to prepare for the next one probably this summer some time.

The cardiologist did say today that we should be over the worst of it for this round. He seems stable, he is growing well, that is basically his only goal is to grow big & strong and stay healthy.

How can you help?

• Pray for us. For Gideon to grow big and strong, for our whole family to stay healthy! Pray for us to get a new routine down with caring for his medical needs while also giving attention to his big brothers and maybe being able to do some school work with them and play outside sometimes though we’re often hooked up to the feeding pump and not super mobile. We need to keep our marriage a priority as well and not forget we are partners in more than just caring for our kids so prayers for strength and joy in our marriage would be appreciated as well. Please also pray for me to start getting a good routine down as well as confidence and grace to do this all on my own as Bo goes back to work probably next week.
• Come over to help. ONLY if you and everyone in your home is 100% healthy. Yes, I know that means many of our friends/family are unable to come over and help because there is a sick kiddo at home, we understand. We don’t think you don’t care about us, we are more thankful that you’re up front and honest and will help protect our family from any sickness by staying away for the time being. By helping at the house, that pretty much means play with the big kids. Entertain them, board games, soccer out back, blowing bubbles, play doh, helping with school work, talking to them, reading books, coloring, water paints, dance parties, just giving them attention. They need more attention and entertainment and love and the biggest thing that helps us out right now is having help entertaining them and making them feel special and important and loved.
• Give blood. Gideon went through a TON of blood. He likely will again when it’s time for his next surgery. Please donate if you are able to do so!
• We have a care calendar that I will continue to update as needs arise. Meals have been such a blessing, I can’t even express how much help you have all provided by bringing meals, THANK  YOU! There are house cleaning things on there as well, right now the most help I need with house cleaning is folding/hanging laundry. I can keep it washed and dried, I fail to keep it put away and that takes a long time for me. Here is the link to the care calendar that we have: https://www.mealtrain.com/trains/7nmnw1
• There is also a Paypal link for financial donations to help cover the cost of food/gas from our 26 day hospital stay as well as any medical expenses or other hospital related expenses we incur. We have private insurance and have applied for financial aid to help offset the cost but we have no idea what to expect for giving birth in 1 hospital, being transported in a critical care emergency ambulance to Seattle Children’s where we lived for 26 days and had our first of 2 heart surgeries for Gideon. 100% of the money donated comes straight to our family and is being set aside in a fund for hospital related expenses only for Gideons continued care throughout the rest of this year as we prepare for another surgery and hospital stay which will also require more time off for Bo. Here is the link and instructions for that:  www.paypal.com. 1. Log into your account 2. Go to the Menu on the upper left-hand side 3. Select Send and Request 4. Select Send to Friends and Family in the US 5. Enter their e-mail kari@thebradshawcrew.netFeel free to follow along by subscribing to this blog (top of this page on the right hand side, you can enter your email address to be notified when a blog is posted) or join his FB prayer page where we have some additional quick updates or pictures from time to time just because it’s quicker/easier for me to update on there if I don’t have the time to sit down and write out a whole blog. Here is the link for his FB page: https://www.facebook.com/groups/158210648110517/

  THANK YOU for the continued support! We appreciate it so much.  The comments on the blog, the fb page, the prayers, the food, the encouragement, the grocery deliveries, the starbucks runs, the cute little clothes, it REALLY does help us out and I wish I could sit down and hand write thank you notes to each and every one of you who have done these things to help us out but I would be sitting writing thank you’s forever and not taking care of the kiddos so I can’t write now, I feel bad about it but please know, we appreciate you so much, we are so thankful, grateful and blessed by you all. I wish I could say more to express it.

We are working on our morning routine today. This picture is Gideons area. On my bedroom floor. His wedge that he sleeps on is too big for the co sleeper we were gifted for him that’s setup next to the bed so for now, he sleeps on the floor. I really do want to use that co sleeper… hopefully soon if I find a different elevated wedge for it. He doesn’t mind. It makes it easy to just slide out of bed at night and deal with him and climb back in bed.

This morning, the plan was to get the big boys up and situated, pump, feed & medicate Gideon and hang out as a family downstairs. 2 of us (not Gideon or I) have sniffles/cough so 1 is in his room happily entertaining himself alone while the other 3 are downstairs and I’m in my room with Gideon to try to keep us away. He pooped from 8-9am (yep, takes him a while) and I waited until I heard the 4th round to make sure it was safe to change him. He had a MASSIVE diaper. I opened it up, started cleaning and he let loose yet again. I was covered from my chin to my toes and everywhere in between. My clothes, his clothes, blankets, floor, boppy, my skin. Um, yuck. I cleaned him up and called bo to help feed him, we need to try to keep him on schedule as we are changing up his feeds almost daily to progress him. Bo fed him while I showered and cleaned up the mess. Bo troubleshot his feeding pump and we think we got that figured out so now for his 9am feed, he just got plugged in at 950 to take his last 25ml. Not bad considering! So his pump will finish at 1010, then I’ll flush his line and he will be done with his morning routine only having taken 1 hour 40 minutes.

Bo has the other 2 Little’s downstairs and is trying to manage them while making breakfast for the 5 of us.

As long as I don’t cave and buy a bunch of junk food at the store and keep the fridge well stocked with chopped/washed lettuce, this is going to go well for my weight loss goals. Every time I open the fridge if I find a bag of clean, chopped lettuce, I’ll throw it in a bowl with anything else nutritious I can find and eat a salad. If there is junk, I’ll grab junk but we don’t usually have junk food on hand so I’ll go without which I shouldn’t do right now.

We slept a little better last night! I went to bed much earlier and only had to help wake bo a few times for the midnight feeding but never got out of bed. I handled the 3am he did most of the 6am but we shared that one too. A much better plan than the previous night. We will keep tweaking to see what works best for us.

Prayers for today: a healthy home! Please. All of us need excellent health! None of us have got enough sleep so I think the kids may have early/extended naps today to try to catch up on some sleep and heal their bodies.

The picture is Gideons little area. We are getting a routine down with the constant stream of bottles/milk measuring cups, food bags, medicine syringes and other necessities he has to keep it mildly organized. I wasn’t going to keep any of the gray bins from the hospital but I’m sure glad I did! Everything gets stored in those and they are in a constant rotation going upstairs and downstairs to wash, rinse, dry & repeat with all the necessary equipment. The black bag with the little orange thing in it is his feeding pump. Pretty cool it’s so portable so we can just grab it and go and we keep everything we need to feed him right in the bag. I’m sure I could probably fit a couple diapers and small pack of wipes in it too so that may just become my diaper bag for him. We’ll see, it is pretty small. But I’m glad they make it portable for us so we can leave the house and feed him on the go.

Ok, gotta go finish scrubbing the carpet. Have a great, healthy day! THANK YOU for praying for us all!!

We are blessed. We are overwhelmed. We are grateful. We are tired. The amount of love these boys have for their brother is astronomical. It’s the coolest thing in the entire world. I wish they would love him from a bit more of a distance. Hahaha 😂

Gideon is doing great, his stuffy nose sounds better, thank you for praying! Medically, we seem to be doing pretty good right now. We could prayers for more peace here. It’s just a lot. A new routine, a lot of work, a lot of adjustment, a lot of patience all on very little sleep. I’m so thankful to be home and back together with all my boys, I’m looking forward to a new routine that’s healthy and joy filled for us and it’s only been 24 hours, we haven’t figured that out yet. But we will. And while we do, we are SO thankful and grateful for the help and support we are receiving! Thank you for that! And the prayers!

Time for bed! We have feedings at 12, 3, 6 & 9 and flushes at 1245, 345, 645 & 945. ❤️

Guess who got some sleep last night!?! This guy up here! ⬆️

Guess who didn’t get sleep last night? His mommy & dadddy! LOL. We have some kinks to work out in his feeding schedule. As it is, we have to either medicate, feed or flush at 9pm, 945pm, 12am, 1245am, 3am, 345am, 6am & 645am. That was a lot of breaks in our sleep last night when we didn’t even get to bed until after his 1245 flush so we were up 4 times between 1am & 6am. There will be Starbucks in our plan for the day.

But how cute is he?!? He has been perfect since we got home. Keep clean pants on him, keep him fed and he will just hang out, look around, coo a little bit and rest a lot which is great. I would love to make The whole days supply of milk this morning if he rests before brothers get home to meet him, which will be very soon so it’s unlikely.

Things im thankful for:

Mae will have our whole family of 6 together for the first time today! No worries, I have a selfie stick Bo got at a conference once, you will see us too!

Good toilet paper! Oh my heavens. Thank you Costco for jumbo packs of charmin. 1 ply crunchy hospital toilet paper was awful.

All of the help people are willing to give – when everyone is healthy in everyone’s families!

My bed, shower, shampoo, soap, pajamas, carpet, a couch… HOME.

This outfit he is wearing is a NB size gift he got from a friend. Looks like mama gets to go shopping to buy a couple preemie outfits for him to wear this month! The preemie ones say they only fit up to 6lbs which he is 5.5 so I’ll have to see how it actually fits on him after I wash it today. I have 1 so far! We didn’t plan on him being this small!

Prayers:

no boogies or crusty nose for Gideon. He sounds whistle’y today so I know he has some dried crusty stuff in there I’ll try to get out with saline & suction today.

Good meeting with big brothers, health & safety for us all!

A productive day of snuggles, love, relaxing & getting a routine started to set us up for success when daddy goes back to work.

I would say pray for poop again but that’s going on right now (for Gideon) so we are all good there. LOL.

Mostly prayers for health and peace in our home as we transition back. No stress or anxiety.

THANK YOU! Be on the lookout for selfies later if I get a chance to post again! 😁

Just a quick one tonight. We’re home safe! We got home to the cutest welcome home sign made by the neighbors, SO SWEET! We haven’t even unpacked yet but had to get out at least the supplies we would need throughout the night. The amount of medical supplies we came home with is staggering when I laid them across the living room floor. We are totally exhausted and ready for bed. Just in time to set the alarm and wake up for a feeding . Then another. Then another :) Lol. The big boys are having a slumber party at my parents house which is fantastic. This would have all been way too much to manage tonight when we’re completely exhausted with mixing formula, pumping milk, dosing medication, setting up the pump, cleaning bottles, changing diapers, snuggling a baby, getting a kit setup for upstairs as well as one for downstairs so we don’t have to take everything with us wherever we go (stethoscope to check placement of NG tube, sterile water to flush it, syringe to flush, feeding pump, breast pump, bottles & parts, etc etc etc.) We are overwhelmed but so thankful to be home and be together. I will try to update again soon. Please pray for a smooth transition home for the boys tomorrow and lots and lots and lots of patience with very few, if any opportunities to practice it.   :) THANK YOU!

Sign from the neighbors :)

a months worth of syringes to check NG tube placement and flush it

1 month of medical supplies for the NG tube & feeding pump

Breastmilk stores… He gets to increase his volume by 5ml per feeding tomorrow s hopefully I won’t be storing up much milk, I just want to make what he needs with a small reserve.

preparing for the overnight feeding pump feeds…

Thankfully he only came home with 2 medications to give twice daily (though 1 is a compound mixed only at Childrens with a short shelf life and has to be refrigerated so I was only able to get 1 months worth) and 1 vitamin but we only have to give meds twice daily. 

Fortifying milk (adding protein/calories with formula)

Trying to organize some of our supplies
Winning. feed done. meds done. baby done. night night!!!

Look ma! I grew! Another 25 grams today! YAY! BIG boy! Granted, he hasn’t pooped yet today so we’re in for a DOOZY at some point tonight but hey, at least we took his weight before that happens! LOL. Since I’m already talking about poop, I’ll share yesterdays story. His nurse (our favorite who I wrote about below) had to attend a meeting yesterday so someone came in to cover for her for 4 hours. She’s a nurse who hasn’t been on the floor working with patients very much as she is just completing her schooling to become a Nurse Practitioner. So yesterday, she comes to the floor wearing her normal clothes (many of the nurses just wear their normal clothes, not scrubs) and Gideon was her first patient. Long story short, she spent about 10 minutes in our room doting over how cute he was, on and on and on and walked out covered in his poop. Shirt, pants, arms, gloved hands, yep. He got her. Welcome back to nursing!! She came back about a half hour later in scrubs.

Dreaming of mama milk in mommies arms. No place he’d rather be. Taxes? Meh. Balance the checkbook? Meh. I’ve got other priorities…

Ok, I’ll admit. I cried when I had to say goodbye to his nurse tonight. We’ve had her for 4 days and she was AMAZING. Seriously. Amazing. I already wrote a letter to her boss to let him know that she was the best nurse out of the probably 50+ nurses we have been in contact with over the past 25 days since we got admitted. She deserves an award and a raise. She has been such a blessing and an encouragement to us, God certainly sent her as a gift to us to help us prepare to break out of here. It’s crazy to think that I cried saying goodbye to a nurse who worked with us for only 4 days but wow, emotions, hormones, current situation, I pretty much don’t talk to anyone without crying now, I guess it’s good we’ve been in isolation. LOL. We are still possibly on track for discharge tomorrow. Gideon has been stable and his stuffy nose is pretty much gone. They did suction out some bloody crusty boogers from his nose today, probably damage I did from trying to place his NG tube. Poor guy. Medically speaking, he doesn’t need to be here. We are still here today to confirm weight gain and make sure Bo and I had the training we need for the NG tube placement and the food pump and another appointment with the occupational therapist. Rounds in the morning should be interesting with the occupational therapist working with the dietitian and cardiologist to agree on a feeding plan. We already have our follow up appointments scheduled so we’ll just button up some loose ends tomorrow, pray for a stable night and a stellar day and maybe go home. Yay! Scary! :)  

Prayers:

• A clean bill of health! No cold type symptoms and continued progress with improved lab #’s, cardiac output, respiratory effort and overall stability and weight gain.
• Rest! We all need rest. Lots of it.
• A smooth transition home
• The other new friend cardiac mom I posted about earlier,  please continue to pray for her daughter to heal. She is feeling better but needs to heal up even more!

  Thank you!

It’s been a great day! Gideon guzzled 17 ml by bottle this morning and overdid himself again, we may have to switch back to the ultra preemie bottle nipple to keep him safe for a bit since he’s getting quite an appetite now that he’s not on continuous feeds 24/7 anymore and only gets food every 3 hours now. I got up early this morning and got myself cleaned up (I shower before bed every night but often sleep in until it’s time to get stuff done in the morning and don’t even have a chance to throw deodorant on or brush my teeth before getting busy for the day) so it was nice to be well rested and ahead of the game today.

Because we had some training to do, Bo took the kids to a friends house to watch them while we had our education up here. GOOD LORD!!!!!!! How handsome are these huge fellas!?!?! Oh my mama heart misses them so much. I’m so thankful for facetime and pictures but I just want to have some time to sit and snuggle each of these guys and love on them 1 on 1 for a while. I’ll have to make that a priority after I get home to spend at least a little bit of time with each of them individually to catch up on snuggles.

We finally got to blow up our balloon we have had since we got here. A dear friend sent it to us from the gift shop shortly after we arrived but we couldn’t  have balloons in intensive care so I got it blown up to brighten up our penthouse suite (isolation room) today. We love it! So cute! I have always LOVED balloons, fresh flowers and balloons are 2 of my favorite things and how perfect that it’s a heart balloon. So cute!

Part of our training today was on how to drop an NG tube for Bo. I’ve completed the training and had 2 separate failed attempts which were pretty traumatic for both Gideon and I. Bo joked around about it and BOOM. In 1 second flat without even a cough or gag from Gideon, it was down. SERIOUSLY!?!?!?!?!? How does that happen!!!? Well done daddy, well done.

We just met with the occupational therapist again for the day. Feeding him just took 1 hour. Doh! Ha. He is supposed to eat 8x per day…. Hmmm… that’s a lot of math. LOL. The goal is to get him off of the feeding pump first then off of the fortification next. We do that by condensing his pump feeds in an effort to get 8 feeds per day at 30 minutes or less. Right now, we pump (ng tube) at about 45-60 min per feed. When I bottle/breast feed, we are only allowed 10 min each because he expends too much energy eating for longer than that then the rest goes through the tube. When we’re not doing that, I’m pumping to make milk for the bottles and the tube. Lol. This might be a little more time consuming than I had thought it would be. The therapist wants to do 2 bottle feeds per day and 2 breast feeds per day and 4 pump feeds per day. That should be manageable. He gets very worn out after eating and goes right to sleep! He is resting now while I wash things then meet with his nurse to plan out our night and potential discharge information for tomorrow if all goes through. 

Prayer requests: 

• No cold symptoms – he has improved again today and has sneezed once. Impressive, I know. Lol. We need to have another full night and day of no cold type symptoms tomorrow as well to consider being able to come home, which they are still planning on doing unless something changes tonight. 
• A restful night. 
• Cardiac & respiratory stability. He has had a few stable days in a row, we are praying it will continue. 
• A new friend whose daughter is here battling RSV. She is a heart baby too and needs some prayers for quick healing. 
• The transition back home when we get to make it. The big boys will be so excited to see and play with Gideon but he is still so fragile. You can’t pick him up like a normal baby since his sternum is wired shut and the bone is growing back together, he has less muscle tone than normal babies and will require MUCH more sleep than normal infants. 

  THANK YOU so much for the continued prayers and support! I will be adding more things to our care calendar/meal train plus site soon as needs arise. Childcare for the big 3 boys while we have follow up appointments with all the doctors he will be following up with, probably some added meals as I’m heading back home soon to help us settle back in with all 6 of us at home for a short while, I’m not sure what else but I’ll certainly let you know!

We will be on quarantine/isolation at home for a while with the continuation of the flu season being extended into March and may not be up for very many visitors for a bit. All of our families haven’t even had a chance to meet Gideon yet but we need to make sure entire households are 100% healthy before someone comes around him. Even a mother who has a sick child at home can’t be around him right now so we will be very careful about who we allow to meet him in person while we’re still in such a fragile time with him. We love you all so much and are so grateful and thankful for your prayers, support, encouragement, meals, help, thoughts, comments & wishes. Please please please understand we want to spend time with each and every one of you, we just have to protect him right now while he’s still so fragile while we wait for his next surgery in 4-5 months.

Due to a stuffy nose, (as well as some other more significant, non medically related issues) we have been moved into the penthouse here at Seattle Childrens. Otherwise known as “isolation”. I am sad that the staff now has to gown/glove up to enter our room but am thankful to now be in a room on our own that’s a bit safer, has a bit more space and some fresh air! I took a nice hot shower tonight while our night nurse did Gideons vitals then I fed him (via bottle – he did better than ever before), hooked up his feeding pump, checked the line, mixed his fortified milk and set the pump to give him the rest of his 9pm feeding.

We had a good day today, his sniffles actually sound like they are decreasing from this morning so please keep the prayers coming! We need a sniffle free baby to even consider going home anytime in the near future. His cardiologist is still planning on releasing him on Friday even knowing there is no way I would take him home with a stuffy nose right now so he’s fully confident it will be resolved before then. I am praying in agreement with him that he is right! Thank you for joining us in that!

We had a pretty good feeding day today, the goal is to get about 20 ml per oral feed (only 3 per day right now) then do the remaining 25 ml via the pump over the course of an hour. He is only allowed about 10 min to try to drink all that and milk flows pretty slowly out of a preemie sized nipple, especially when it’s fortified with powder formula. He took 15 ml by bottle this morning at breakfast which was great. If I remember correctly… for lunch, he only got 4 ml by me but he will get better as we practice at least once each day. For dinner tonight at 9pm, he attempted to GUZZLE very quickly and overdid himself just a bit and pounded 17 ml  in about 6 min so I had to stop him. His work of breathing increased quite a bit and he had milk starting to run down the side of his face. Seeing his appetite increase is fantastic, but he has to be able to eat properly without drowning himself and continuing to breath with some ease as well so he doesn’t aspirate his milk into his lungs or throw it all up. So far, he hasn’t barfed anything up, that’s another prayer for us. No barf. He needs to keep all of his milk and his NG tube down so please pray for no barf.

He gained 30 grams today. THIRTY grams!! That’s even more than yesterday, his cardiologist will be so pleased in the morning, he may try to kick us out tomorrow if his breathing sounds better but we have training to do on the feeding pump, the NG tube (I had my 2nd unsuccessful attempt today that landed both of us in tears yet again) so please pray for Bo tomorrow, he has to do it too so pray that he is able to do it with ease and comfort for all of us. Gideon is so small, he has tiny little itty bitty nares and 1 of them is shaped in an odd way that even the nurse can’t get the NG tube down it. I’m sure she could but she knows how uncomfortable it makes me watching her try so she doesn’t and just uses the right one which we know works.

Prayer requests:
–  No cold type symptoms. No boogers,  no stuffy nose. Complete health!!
– No barf and continued progress with oral feeds as well as condensing tube feeds.
– Ease for Bo to place an NG tube tomorrow & our home care training
– Bo at home with the boys. It’s hard work, they can all use some prayers :)
–  Rest for everyone tonight. Gideon had a pretty restless day today  and I just got him to sleep, I hope I can follow suit very quickly and sleep all night long. His night nurse tonight is so sweet, I asked her if she would do the pump feeds for me and she said yes. I may only have 1-2 more nights left of having a nurse available to help with that but that’s apparently why they are requiring to train Bo on it as well so he is just as qualified as I am to run the feeding pump and mix formula to feed with bottles. This will be my only baby that I’m not 100% responsible for all feedings right now which I’m really actually looking forward to. I can’t currently provide him with what he needs because he would have to nurse all day to get the calories he needs to get from me but in doing so, he would lose weight because it’s so much work for him so I’m thankful we still have a way to get him what he needs and Bo can participate as well.

Thank you for praying for our specific needs! We appreciate it so much!  Time for bed!

Many blessings from the whole Bradshaw crew!