Friday 8/24 – 4 weeks post op

Today is our 4 week post-op anniversary. It blows my mind that just weeks ago, Gideon looked like this picture on the left. I took the picture on the right at the cardiologists office today. It’s been quite a journey these past 4 weeks and it feels like surgery was just yesterday but so much has happened since then.

He was extubated. He went into respiratory failure and was re-intubated. He had an IV infiltrate leaking a bunch of lipids into his foot that caused a nasty case of cellulitis. He came home and got to be reunited with his brothers. He has had 3 doctors appointments in the last 11 days since he got home. We have now discontinued all cardiac meds and are down to a daily dose of vitamin D and twice daily Ranitidine (Zantac) for acid reflux. We pulled the NG tube and he is exclusively breastfed and we will be re-starting solids again to make up for the calories lost in my lack of abillty to produce enough milk for him right now. I’m sure he will be happy about that, he used to really enjoy his oatmeal with pear juice, avocado with cream cheese and extra high fat yogurt. I need to get some groceries for him.

The cardiologist was very pleased with the progress he made this week with his foot. It’s still bruised all the way around and there is minimal swelling but he said another week and it will be back to normal again, I don’t even need to continue using the warm compresses on it.  There is concern about his lack of weight gain but there are so many variables, all of which I have individually addressed and am doing my best to remedy. He trusts me to manage his weight by myself at home knowing that I have a scale and can weigh him every few days to see how we’re doing. I plan to pump and nurse 24/7 for the next 2 1/2 days until Bo goes back to work and hope that’s enough to get us into a good routine of making and drinking enough milk to sustain without having to pump all day when Bo is gone again.

I keep thinking about writing a blog about what a journey this all has been for me. An exercise in my faith that has brought me closer to God. I have so many tips and tricks and insight that could help other mamas who are heading down a similar path that I have been on and I want to share with them so they have an idea of what to expect and how it can ease the blow for them. But it’s all still a bit too much for me right now. I haven’t even begun to process any of this in my own mind or my own heart and I just cry thinking about the whole ordeal and can’t even come up with any words to say. I know I will in due time and it will help me to process when I can get it all out there and written out, since that is how I process and hopefully it will help another family. In the mean time, I reach out to them individually and offer encouragement 1 at a time as I’m able to connect.

We are doing well though. Sleeping in our own beds. Living the chaos that is life with 4 boys ages 6 & under preparing for a new year of homeschooling a 1st grader, Kindergartner & Pre-schooler. with a special needs infant in tow.  We are joining a 2nd co-op for more educational support for our family and I’m also joining a MOPS group at the church I attend. Trying to get back into life as much as we can while also protecting Gideon and all of the boys from any sickness because we still need to have excellent health in our house. Gideon is, only 4 weeks out from open heart surgery and still has a weakened immune system that will take a while to boost back up again. He is well though, we are well. It’s chaos and mayhem, it can be overwhelming and is always exhausting but it’s often overwhelming in an awesome way as much as it is in an exhausting way as well.

I have a blog of thanks to write someday as well. But again, I think of the blog title ‘Thank You’ and the tears just start flowing. Gods goodness is abundant in our lives and your prayers for our family are what’s got us through. Someday, I’ll have more to say about that but that will have to wait for now too.

Gideon is up and hungry. Time for me to get. So much love, gratitude & appreciation to all of you. Please keep the prayers coming for continued health, growth, milk & adjusting into a new normal again.

Thank you. From the very bottom of my heart.

Thursday Night – Week 1 day 7

Prayer Requests:
Healing rest
Gideon’s lungs to clear up inside & out
Gideon’s heartrate, blood pressure & rhythm to maintain stable & good
His hematocrit to rise
To have EXCELLENT results from his chest X-ray, labs, EKG, Echo & other studies in the morning
My big 3 boys at home with daddy

Today was backwards day. Gideon was rocking it this morning though he was  a bit fussy so he got the swing which wasn’t that awesome for him. I don’t remember all the events or details of the day because he’s been through the ringer today, therefore, I’ve been through the ringer today as well but he is stable now and resting again. He had 2 separate episoses of fits (not seziures) and desaturation. The first one got him put on CPAP to help him breathe which it slowly did, for the most part. But his work of breathing was awful all day long even though his sats came up some and his rate did decline. He was still sucking really hard to get any air. His 2nd episode earned him the ET tube again (breathing on the vent) but now his lungs can fill full & relax while he has more time to heal.

His dayshift nurse made that name banner for him today, isn’t it cute!?!?!

We aren’t 100% certain what happened or why, we do know it’s likely in part due to stopping 3 cardiac medications cold turkey this  morning which put a lot more workload on heart and started the fluid  backup into his lungs. We think that due to that, he was tuckered out from trying to breathe so hard and likely aspirated a bit when he did breastfeed, which he did this morning and that exascerbated his already angry, fluid filling lungs.

I  was sad that he had to get intubated again, but now I’m so thankful he can rest and breathe easy. I don’t have to listen to him gasping, grunting and squeaking for air, his lungs are filling full and he doesn’t have to work for it at all. He is getting chest physiotherapy every 4 hours now which is where they come and literally beat on him with a bell on a stick to break up some of the fluid accumulating around his lungs and suction it out so they don’t collapse. He seems to enjoy that, he always likes to be tapped.

There are many details I’m forgetting but for now, I’m just thankful that he is resting comfortably and he is able to oxygenate well with no work of his own. I pray for good answers in the morning and forward progress for him tomorrow (which is now actually today, yikes, I need to get to sleep).

Bo went home on Tuesday and got the bigs home on Wednesday so he is home with the big kiddos. We will try to schedule help for him at the house as often as I can find people to come over and play with the kids or take them  for a walk or to the park or outside to ride their bikes or in the back yard to play ball or do crafts inside or play a board game or read stories, etc. I will try to update the care calendar and add some meal dates to it tomorrow to feed the boys as well.

As for me, I’m fine at the hospital. I have some food here or can grab something from the cafe/room service menu when I need.  I have clothes and laundry, things to do that I’ve had here for a week now and haven’t even looked at yet so I guess I could use some time to get the stuff done? Peace and tranquility for Gideon so I don’t have anything else to do… I spend most of my time at his bedside and I’m pumping milk for him so I have to pump/store/wash 4-5 times per day and I do feed myself and shower everyday to make sure I stay strong. I pray a lot and read scriptures over him because that gives me a lot of comfort to speak Gods word right to him  in his bed. I’ve learned that I like visitors earlier in the day when possible rather than in the evening. I’m too exhausted in the evening and want to eat, shower, do Gideon’s 8:00pm routine with the night nurse and rest but I’m often so late, I don’t get to eat until after that then shower, pump, do an update and before you know it, it’s after midnight and I’m still going. He gets labs at 1:30 and xray at 4:00 and now he will have physiotherapy on his chest which is very loud so there is no way I’ll sleep through that so I do need to try to get to bed a little bit earlier so I can get more than 3-4 hours of sleep per night. .

Today was just a speedbump for Gideon. All part of his healing process. He needed more rest and time and just had to SCREAM loud enough that we listened and he can have that now.

THANK YOU for praying! Positive updates to come in the morning!

7/29 – Sunday Afternoon Update

Hi prayer warriors! THANK YOU for stepping up to the plate to pray when I sent out the request on FB this morning. If you are not already a part of Gideon’s prayer FB page, please join that group and feel free to share it with anyone who is praying for him. It’s the quickest and easiest way for me to send emergent prayer requests and quick updates so I will update that the most.

I’ll start with the prayer requests so if that’s all you want to read, you can see those and move on. For those of you interested, I’ll try to go into more detail below.

Prayer Requests
– reduced heart rate
– increased blood pressure
– no infection
– tolerance and stability to warming & reducing some medications
– return to a normal sinus rhythm
– comfort for him & peace of mind for us
– my big boys at my parents house & my parents.

The reason for the emergent prayer request this morning was because his blood pressure dropped to 50/30 (bad) and his heart rate got to 200 (bad). He is being paced with pacer wires and he fights the pacer and the drugs weren’t working. They had hoped to avoid giving him Amiodarone but gave him 5 individual doses of that in less than 60 minutes then put him on a drip to run continuoisly. That was at 8-9am this morning.  Right now, it’s 3:00pm and his heart rate is again overtaking the pacing wires and beating at 170 times per minute which is too high so they are calling the team back to come up with a new plan.

I have a page of notes from rounds this morning that I was going to share but I’ve lost the motivation to explain it all now. Since last night, they have added back the catheter because he didn’t pee even after multiple doses  of lasix (bummer), taken him back to full respiratory support on the vent (bummer), added a TON of new meds to support him from a cardiac, pain management & sedation standpoint (bummer), they have cooled him more down to 93.92 degrees farenheit (bummer) & increased his fluids (bummer). Even with all of that support, they still can not manage his heart rate. He is in what they call “JET” rhythm, which is junctional ectopic tachycardia meaning his heartrate is being generated by his ventricles rather than his SA or AV nodes which would be the normal or backup way the heartbeat should generate. His rate is 180-200 on his own which is not acceptable so they are trying to pace him down to 150 and eventually 140 or 130 but they can’t even get him down to 160 yet today.

The positive for today is that he had his chest tube removed so hopefully he is more comfortable now, even though he is so drugged on sedation drugs, paralytics & pain meds, he really should just be seeing rainbows, roses & unicorns and that’s all. They tested his blood for signs of infection and that test came back with a 0 result which is awesome. Being febrile (hot) is normal after this kind of surgery for your body to recover so he is laying on an electric cooling blanket with ice packs around him to keep him cool. He is very cold to the touch. It’s sad but I’m not really allowed to touch him right now anyways because heat throws his heart out of whack.

That’s all I have for now. Thank you for the continued prayers. I do read each and every one of the comments on the blog and hope to just keep his updates on his prayer page to keep it in 1 place for me to see it all rather than sharing on mine or Bo’s personal pages. I want to see every comment so I won’t be sharing on our personal pages anymore after this blog so I can try to keep up with everything so again, please join the group for future updates. We truly can’t thank you enough for the prayer support and I’ll try to do my best to keep the requests up to date and specific for you.

7/28 Update

7/28 Update

More consistent updates can be found on his FB prayer page:

Gideon had his heart surgery yesterday. He had a complete AV Canal repair and takedown of his pulmonary band. Basically, that means they built the walls in the heart that separate the right and left sides and top and bottom, creating 4 chambers in his heart that he didn’t have before. They also crafted valves to direct and pump the blood to the right places. In addition, they removed a band that had been sewn into his pulmonary artery and grafted a patch for his artery in that place. It was a massive surgery that went better and quicker than expected which was a huge blessing. The surgeon was very pleased with the repair and said it’s unlikely he will need any valve repair in the future.

Now we move on to the post op care and recovery! This is where the real fun begins. In true Gideon form, he was a perfect angel post op until it was bedtime last night. He got hypotensive (low blood pressure) requiring some medication and additional fluids then he lost his P waves (what starts your heartbeat) so they had to put him on the pacer so his heartbeat is now being set by the pacing wires that are still inside him. They also cooled him to constrict his peripheries and let his heart have a bit more of a break to recover for a while. None of this is uncommon for the surgery he had so they aren’t concerned at all. They just removed his Foley catheter, so he gets to pee into his diaper freely and we will just weigh every diaper to monitor his output. Heart and kidney function on echo both look good. His post op EKG was great, normal sinus rhythm so hopefully he will return to that again. He was left with 2 very small holes in between his ventricles so while he does, for the first time ever, have an actual heartbeat, he still has a bit of a whoosh left as well. The surgeon thinks those will close up on their own, if they don’t, it’s ok.

They aren’t going to put the tube in for feeds yet, his system needs to rest and he is ok to go without for a day or 2 post op to let his whole body work on healing his heart. He may get an NG tube tomorrow or potentially try bottle or breast, it depends on his status at the time.

They will attempt to extubate him today. He is still on the vent but only on room air at a low positive pressure setting so he doesn’t have to suck so hard through the tube in his nose to get air. From a respiratory standpoint, he is doing fantastic.

They are closely following his NIRS (near infrared spectroscopy) which were a nightmare when we were in the first time, they are fantastic so far this round. His lactates (lactic acid levels which show the stress level of the heart) are great so far. His blood pressure is good today, partly due to the pacing wires, hopefully partly due to healing and him getting used to his new heart function.

The doctor this morning wants to let him re-warm but they are going to need to keep cooling him because his temp wants to go above 101 which they won’t allow. So he still gets an ice pack “blanket” for today so he doesn’t get above 101 which apparently is normal in this post op state and doesn’t indicate any infection. They aren’t concerned about his temp at all other than wanting to see his heart rhythm and rate at a thermo-normal state to see if his P waves come back.

Prayers for now:

Return of his P waves
Stability with his blood pressure
Successful extubation today
Comfort for him – we still aren’t allowed to touch/hold him and aren’t even really talking to him because he will fidget and wiggle and they want him calm and still without having to 100% sedate him so he is very off limits right now to even talk or touch. ☹
Remain infection free

We truly can’t thank you enough for your prayers, support & encouragement through all of this. While I can’t reply to every comment, I do read each and every one and appreciate you all so much! I have all the scriptures that you sent me printed on papers hanging at the head of my bed next to the pictures of all my boys taped to the wall.

We are hoping for a very quiet, boring day today and more rest for both Gideon and I. There were a lot of people in and out of his room from about 10pm-7am when he settled in this morning so while I did lay in bed, it wasn’t very restful, I could use a good nap today.

Love and blessings to you all!

Pre-Op Appointment

We had our pre-op appointment yesterday. It went really well. Gideon had chest X-rays done, labs drawn, vital signs, height, weight, etc. We met with parts of the surgical team, the post surgical team, the anesthesia team, then we got to speak to his surgeon on the phone last night and I spoke with his Cardiologist on the phone this morning.

The poor guy has been through a lot this week. He had his 6 month well child check on Monday where he got 2 shots and an oral vaccine. The cardiology team told us to make sure he was up to date on vaccines prior to surgery as that is the #1 most important thing we can do to protect him and his health. #2 is good handwashing habits. He was already fussy from shots the day before then off schedule with eating/sleeping because of all the appointments and running back and forth in the hospital all day.

He did good though. His o2 saturation was averaging about 85% which is a bit too low the first few times we checked it. It’s an art though, he has poor perfusion because he has no chambers in his heart so his deoxygenated blood is mixed with his oxygenated blood and it all goes to the wrong places so he doesn’t have great perfusion. That means his feet can get pretty cold when he’s fussy or not totally wrapped up because he has deoxygenated blood flowing to them rather than only oxygenated blood like healthy heart kids. They kept trying to get the pulse ox on his foot and he was cold and fussy and kicking. Long story short, we got it up to 88% later which was great news. They mentioned admitting him early for “respiratory support” as it seems he is growing out of his pulmonary band now, which was the original plan, surgery at 4-6 months to remove the band and repair his heart and he is now 6+ months old so the band has done it’s job and it’s time to go!

His labs came back showing he is anemic. He will get transfusions during surgery so that should take care of the anemia. The surgical plan is to arrive at the hospital around 6am next Friday 7/27 and he is the first case in the morning. They hope to get started with him around 7:30am. They said surgery could be as fast as 4 hours but they always start late and they always run long so it would be safe to plan 8am-2pm. It also takes some time to re-warm him and get him off bypass then walk him across the hall to the Cardiac Intensive Care Unit where we will be staying for our first while.

They encouraged visitors to come between 8am-2pm if we have people we want there or there are people who want to be there to support him/us on surgery day. We will not have our room yet so we will have our luggage with us and we hope to get one of the sleeping rooms available for the ICU patients so I can pump milk for him there and we can nap if we get the chance. I don’t see either of us sleeping a lot the night before. They said after 2pm, if surgery is done we need to tell our visitors we are done for the day and go be with Gideon. They said we will have an extremely busy night getting him settled and meeting with all the care teams who will be working with him for the first week post op. They very strongly discouraged having visitors for a bit while in the CICU because the rules there are much more strict than in the post surgical unit which we will graduate to eventually and have more availability to visit with visitors and have people see him in his room there but not in the CICU. We can step out and meet people in the lobby to visit but it’s unlikely they will go back to see him in his room. In the CICU, we can’t have balloons, flowers, food, drink or anything. It’s a sterile room becase if there are any complications, they use those rooms as operating rooms so they need to remain sterile at all times. That’s why they don’t want visitors, food, drink, etc in those rooms.
The surgeon feels very comfortable and confident with his procedure. He is optomistic that we will be looking at around a 2 week recovery time. The surgeon and cardiologist both think it’s good for us to plan for a month in the hospital but are both very optomistic thinking we may be out in 2 weeks even planning on him having respiratory difficulty (getting off the vent) then switching to high flow oxygen and having to be on the Milrinone again which he got stuck on last time. Neither of them are concerned about those at all which is encouraging.

So that’s about it! Surgery is in 9 days, I am not ready. The fridge/freezer aren’t stocked, my bag isn’t packed, my heart and head aren’t ready but we will handle it as it comes, do our best, trust God for a sweet time of healing and restoration for Gideon. Our tentative plan is for Bo and I to stay at the hospital with Gideon on Friday and the first 2-3-4-5 post op days depending on how he is doing while my parents keep our big boys. I have childcare arranged for the boys to have play dates with some friends of ours on Monday and Tuesday so my parents and the kids can get a break but they will still be sleeping at my parents. Then Bo and I will take advantage of the $100,000 per day childcare we are paying for and come home together stopping at Costco on the way to stock up the fridge and freezer and go pick the boys up and bring them home. We will get everyone all settled at home and I’ll return to the hospital that evening to take the first shift with Gideon alone and we will swap out at some point, somehow, none of those details have been worked out yet. At least that will leave each of us with 1 car, me at the hospital and Bo at home with the big boys. We have an open mind and are being flexible just going with the flow not knowing exactly how it will go, that’s ok. It will work out as it should and we trust in that. I’m already starting to get my hopes up that maybe we can come home after 2 weeks but need to be careful not to expect that since it’s certainly not for sure. We will need help when Bo is home with the boys and try to schedule help from friends and family to come over and help him with stuff at the house, it’s a lot of work having all 3 alone so friends to visit and play games with the kids or play outside with them or help with their school work or just  hang out and help out with whatever they are doing at the time is our biggest need that we know of for now second to prayers. I will try to update the care calendar with specific needs/times as they are known so if you want to help out, there should be opportunities for that. This is the link to our care calendar that is currently empty, I’ll update it when the needs arise.

I did find out I will not be receiving any meal vouchers like I was able to get last time since I am Gideons meals and he was inpatient, they gave me some meal vouchers to ease the cost of eating at the hospital everyday. Apparently that’s only for 1 hospital stay per person so I won’t get those this time. I was given some Nutri System meals to take with me to try while I’m there this time and I have access to a fridge so I’ll probably buy some pre-made salad mixes and meat/cheese snack things to keep in the fridge. I am attempging to get back to low carb eating and I really enjoy salads and meat/cheese snacks so that works well for me and is convenient to have there to grab and eat quickly. Honestly, I don’t like to go to the cafeteria, I have to walk all the way to the other end of the hospital and get exposed to all the germs along the way and just don’t like to go there so I don’t often venture out that far away from his room. When I do have to order food, I order from their room service menu and pick it up and bring it back to the family lounge but don’t have to go very far to get it, just to the basement in the elevator. We still have some money left from our paypal donations to put towards the cost of our time in the hospital this time around as well with food, gas, whatever else hospital/medical related comes up.

Feel free to post your favorite healing, encouraging scriptures in the comments here or on the FB page (comments on the FB page are easier for me to read then here on the blog page) because I plan to write out my favorites so I have them at a glance rather than rifling through my bible or scriptures book to find them like I did last time.

THANK YOU for following along, for the prayers & encouragement and walking this journey with us!

The days

We went to church this morning like every other Sunday morning. I strapped Gideon in the Solly baby wrap and he went to sleep snuggled up on my chest during the worship service. We took communion as we do every week, something I’m so thankful our church does so regularly. Then it was  time for the message. Pastor James said we were going to start in Philippians and told us to open our bibles or our electronic devices to follow along.  I grabbed my phone, clicked on the LSCC app, clicked on the notes portion to write in my notes to follow along with his sermon and saw the date.

Then  I couldn’t breathe. And tears started pouring off my face onto Gideon sleeping just below. I was sobbing pretty good while Bo was wondering what the heck was wrong with me and my friend next to me was searching her purse to find me some kleenex so I didn’t snot all over Gideon, also probably wondering what the heck was wrong with me.

I told them, “It’s July.” As if they didn’t already know. They did. I didn’t.

It’s JULY.


It can’t  be July ALREADY.

It’s too soon. That means I can’t say ‘surgery is next month’ anymore. It’s not in 6 weeks or 2 months or even next month. That means that while we were supposed to have 4-6 months with Gideon at home to grow big and strong for his next surgery, and it feels like we haven’t had that yet, we have, and the time is near for us to go back to the hospital again.

It literally hit me like a ton of bricks crushing my chest. I quietly sobbed trying to catch a breath of air thinking ’26 days’ over and over and over for the rest of the church service. Then, after we were home and Gideon was fed again and played with and it was time for him to nap, I was walking around with him snuggling him like I do before he goes down to rest thinking about it all. It doesn’t feel like it’s been 6 m onths yet. It’s too soon. I am not ready.  But then I realized, even if I had 6 more months to prepare like I want right now, I wouldn’t be ready then either. Who is ever ready to watch your baby be wheeled down the hallway into an operating room where they are going to literally open his heart up, build all new walls and create valves then sew him all back together? No one. No one can ever be ready for that, just like now matter how ill your famliy member is, you are  never ready for them to die. You can think about it, plan, prepare, pray, do all that you can to try to prepare but it will still hit hard when it happens.

I know it will hit hard when it happens. I think it might hit hard for me all month this month as we prepare for it by talking to the boys about Gideon going in for surgery for his heart and having a slumber party at my parents house for a couple of nights and having play dates with friends again without us being there. Trying to plan food in the house and help to come over to be with the kids but I know that no matter how much food I stock the house with or how many helperrs I can schedule to come over to play with the kids, I probably won’t feel any better about it when the time comes. I also know that I may not even get around to stocking the house with food and that’s OK too. It just makes the control freak in me think I’ll  feel better about it for when the time comes.

I know that’s ok. I am so excited for Gideon to be on the other side of this surgery, to grow even stronger and healthier than he is now, to flourish and be ‘repaired’. He will always be a CHD (congenital heart defect) baby/kid/adult  but he will be considered repaired after this surgery although it’s not a cure, it’s just a repair. He has an excellent prognosis and we are even more blessed to have, quite  literally, the best pediatric cardiothoracic surgeon in the nation doing his surgery. There are so many people around the world praying for him and this upcoming surgery, we are so blessed and thankful. I am still emotional thinking about all he has to go through to get to the other side. It’s a major surgery, I know kids are resillient but that doesn’t lessen the surgery he will endure, the pain he will endure, the healing process, it’s a lot for a little guy. It’s only 26 days away. 26 days. 26 days.

Please pray for his continued growth and strength over the next 26 days.  The surgical team, our family, my parents who will have the big boys, our marriage, my mama heart. So many prayers. So blessed & thankful. So excited to get through this and get him back home again with his brothers and heal up! Sad that we will miss the new pastor arriving at our church, the kids will miss VBS, we will miss the new pastors first day, his welcome with his family, it’s a bummer but I guess we will get to meet him later when we are out of the hospital and healed up ready to join the real world again when the germs aren’t so scary after his sternotomy heals up and he is off sternal precautions again.

All of the updates won’t be on the blog when we are in the hospital as I plan to do some live videos to update while we are there. Join his group so you can follow along if you’d like to see the most up to date info, here is the link:


Cardiology Update 6/24

We had the opportunity to meet with Gideon’s Cardiologist again last week. He is such a nice guy, we just really enjoy our time with him. I’m so thankful because he is the 3rd one Gideon has had and he is just perfect for our family which is great because we will have a long term relationship with him! Lol.

I told Gideons’ therapist on Wednesday that I feel like he may be regressing with his strength. He just downright HATES tummy time. Always. And ever. Regardless of what colorful,  sing songy show I can put on my IPhone for him or what toys he has to look at or the mirror or brothers or anything, he just hates it and is completely and totally miserable and will literally just lay his face flat down on the floor and sob and scream. It’s so pathetic and sad. But we continue to try, every single day because it’s so important for him to gain strength that way. We use different props, positions, distractions, elevations, pretty much everything I can think of and anything the therapists have told me to do, I’ve done and continue to try every day. But he still hates it and doesn’t even really seem to want to try to push himself up at all anymore.

The therapist gave me another new idea to try last week that seemed to work fairly well, we rolled him on a pepsi bottle. LOL. Yes, I’m totally serious. That’s one of the things that I love about having in home therapy for him, we find what we have here that will work for him and use the things in our home to benefit him. Even if it’s a pepsi bottle.

This picture above is the aftermath of a therapy session and everything we used for that 60 minutes. I do this on my own multiple times per day but I don’t always get everything out like we do with the therapist here. Sometimes I just put him in his SPIO suit and let him sit for 10 minutes in his exersaucer then we try tummy time on the couch or something and we do rolls and stretches. His neck strength and head control are improving greatly. I can hold him up sitting on my leg and he holds his head up all on his own now which is huge improvement. He also looks both left and right on his own now and his head is rounding out pretty well. I remember just 2 months ago wondering if he was going to feel like a newborn forever with no muscle tone or head control at all. Daily, it feels like it’s very slow moving or even regression at some times but when I look back just 1-2-3 months, I can see we’ve made a lot of progress.

I don’t even know what happened in this picture above .He’s a swaddle master. Yesterday, he had poked a hole in one of his blankets and had 1 toe sticking out. This morning, he had 1 leg out and that was it. He’s a ninja. Hahaha

Elijah was playing ‘Where’s Waldo’ with him in the picture above. Yes, I know, that bunny should be burned. No, I won’t do it. I really would like to find a bunny version 2.0 for when this guy bites the dust but maybe we will get lucky and that won’t ever happen…
Now, on to the Cardiology appointment. I had to get my obligatory selfie with him since I always do that now. :) We did get 2 pieces of “bad news” again this time. It was confirmed that he will have the NG tube placed during/after surgery as he will be sedated (unconscious) for a few days post op (which we didn’t know) and will need to get nutrition so that was a bit of a bummer but oh well. At least we already know how to run the hospital and the  home machines and can manage those on our own and hope it will be very short term this time and we can take it out before we get discharged. We also found out he will for sure be back on the Milrinone which is the heart medication he got stuck on last time after surgery that got us stuck in the CICU for an extra 8 days because he couldn’t wean off of it. It’s a drug for patients in heart failure (which he will basically be in after having his heart completely rebuilt on the inside and be on the heart/lung bypass (life support) machine so his heart will need some extra help getting back on track. I was sad to hear he would have to be on that again which could extend our stay again if he doesn’t respond well to getting off of it but the Cardiologist explained that he is in a much better place this time around for the surgery compared to the first time. He was a newborn, the size of a preemie with low muscle tone and awful perfusion so he had a lot going against him the first time around. This time, he is much bigger, stronger, and healthier going into it so the doctor doesn’t expect the same complications we had the first time. He was very explicit with us though as to what to expect and how to plan to see him after surgery. He said that since this surgery is so much more extensive than his first surgery, there will be many more wires, tubes & things attached to and coming out of him, he will be white in color and extremely puffy and swollen and look very bad. Much worse than he did the first time, I truly can’t imagine him looking any worse than he did the first time being white in color, puffy & swollen with so many tubes and wires. This photo below was taken a couple after his first surgery when a lot of things had already been removed and he was still really white and puffy.

I am not mentally or emotionally ready to see him this way again. It’s hard enough to look back at this picture which makes me cry and think that I hadn’t even bonded with him at this point, I had barely even held him that first week and didn’t even know him yet and now I’ve had 5 months to fall more in love with him every single day, it will be tough to see him this way again. But I know that too, will become a distant memory someday and we will look back and be thankful for how healthy it made him.
On a more positive note, from the above photo, his weight gain is great, he is officially over 10 pounds now which is fantastic! Our original goal was 12 pounds at surgery time, we still hope for that but are happy where he is at and expect him to gain at least another pound between now and then which will be fantastic. We had a bit of a weight regression at our last appointment so I’m glad we got back on track (by adding solids) and have increased his curve on the growth scale. Hopefully I can add even more to increase it even more over the next month!
So the ‘bad news’ that we got wasn’t actually bad news at all. It was information that I’m thankful to know so it’s not a surprise later and helps me to prepare mentally. I explained to the Cardiologist that I’m just expecting to spend 1 month in the hospital with him and will feel blessed to be out in 2-3 weeks if that happens. He is very optimistic that we can be out in 2-3 weeks as long as nothing major goes wrong and thinks I will feel blessed. I hope he is right!

We had the privilege to get Gideon dedicated at church on Fathers day. It was such a sweet celebration and I’m so thankful we were able to do that, Pastor James even included his 3 brothers making it extra special for us.

Prayer Requests:
– Continued weight gain
– More strength gain
– The surgical & post op teams who will be caring for him
– Logistics for us & the big 3 kiddos leading up to and while we are in the hospital
– Peace & energy for my parents while they have the big 3 at surgery time
–  Health & wellness for our whole family
– SURGERY DAY – Friday, July 27th.

I will post another update after our Pre-Op appointment which will be in 3 weeks and we get more details then.

If you’re not already a member of his Facebook Prayer Group, feel free to join & share that page for the most up to date prayer requests, praise reports and live videos I plan to do there when we are in the hospital. It seems to be the quickest, most efficient way to share news so I’ll keep big updates on the blog as well but quicker, daily things I’ll probably just pop on there to make it easy on myself. Here’s the link:

I have so many thoughts about living in the hospital again. I brought my taxes with me to work on last time we were there for a month. I got NOTHING done on them. I had books that didn’t get read, finances that didn’t get accomplished, sleep that didn’t get slept… It’s just a crazy time living in the hospital of basically just standing bedside holding a binkie and stroking his head and praying nonstop with short breaks to go pee, shower or grab a quick bite to eat. It’s literally mind blowing how 24 hours turns into 48 which turns into 72 and you have accomplished absolutely nothing other than pray for and be with or near him, have a bite to eat, pee and take a shower, lay down without getting any actual sleep at all day after day after day because of all the alarms. So I have big hopes of maybe reading more this time (I’ve got 5 bookmarks going right now with more books on hold), the same stack of taxes that has sat untouched on the counter for the past 4 months and a lot more I would love to accomplish but I assume I’ll have even less time to get stuff done now that he can actually interact with me and know me and be comforted by me once he is awake and I’ll probably be too much of an emotional mess to get anything done those first few days while he is resting anyways. We’ll see! If I get to it, awesome, if not, that’s what I expected so it can wait :)

THANK YOU for your continued prayers and support. On my ever growing list of things to do is to thank people individually. Starting with Kelsey for the Christmas cookies she made for us back in December, my friends, neighbors & family who have watched the kids, people who brought us food, picked up groceries or showed up on my doorstep with silver lozenges, elderberry syrup and organic lemons when I was sick, donated money so we could buy food, came over and helped clean the house and played with the kids, sent a house cleaner over for us to have it just taken care of entirely, Terri who brought me the cutest hat ever, people who have brought gifts for Gideon, clothes, messages, emails, comments on the blog. It’s really overwhelming how blessed we are to be cared for by such an amazing community, some of whom we don’t even know who are just helping us. I still have no idea who brought me magazines and a pasta dinner one night in my neighborhood or who slid $20 under my front door mat to bless us… I could cry all night thinking of how thankful and blessed we are by all of you and I hope you understand our gratitude even if I’ve forgotten a gift or haven’t even made thank you cards for you all. This was in no means an exhaustive list of how we’ve been blessed and by whom, there is SO MUCH that I didn’t mention here that we are eternally grateful for and I just really hope you realize how much your kind gestures mean to our family. Even if it seems like a small gesture to you, It’s really a big deal for our family. To be in such a desperate time just trying to stay afloat and being held up by 1 small or large gesture by 1 other person, family or group at a time is how we made it through last time. I assume it’s how we will make it through next time too. Again, I have high hopes of preparing everything and getting everything done in advance and having everything planned and scheduled and prepared but I’m slowly losing my grip on that dream of controlling every little detail and yes, I do want to have food in the house for my family to eat, I know I do not need to plan out every breakfast, lunch & dinner for a month and know that there are already people who desire to help out by bringing a meal again so I’m just going to try to loosen my grip on my dream of perfecting & planning everything a little bit more each day, do what I can, pray, and be thankful for the rest.

Blessings to you! Thank you for walking this path with us!

Surgery Scheduled

I spoke with the surgery schedulers at Seattle Children’s today. The gal on the phone was very kind, she was reading the notes in his chart from his cardiologist as well as the notes from the entire cardiology/surgical team at the cardiac conference they recently had where Gideon’s case was presented. She compared the notes with Dr. Chen’s schedule and asked me how July 16th would worked. I started crying. Whoops. I stammered “but that’s only 4 weeks away, that’s too soon.” She replied telling me that the notes all say surgery was to be scheduled within 6 weeks of the cardiac conference they had this week and Dr. Chen’s schedule is already full since he is leaving and Gideon will be growing out of his pulmonary band in the near future so he doesn’t have a ton of time left before he needs to have it done. So I said ok, if that’s when we need to do it, then that’s when we do it. Then she found a schedule conflict for him that day and told me it would have to be the 27th instead. 6 weeks from today. I gulped. Said thank you, hung up the phone and cried a bit more as Elijah and I were driving home from the grocery store. Elijah asked if I was sad and I explained to him that Gideon is going to have surgery to get his heart repaired and we’re excited about healing for Gideon but it’s sad to think about having to spend so much time in the hospital again, not being able to see my big 3 boys every single day for a period again, and Gideon having to deal with all that he will go through with the surgery. I explained that it’s a good thing, but it’s still scary to go through and while we are so thankful for the help we can receive from others, sometimes big things like this can be emotional to go through.

I pulled myself together and we had a good discussion about it on the way home. Then I checked the mail on our way in. I brought all the groceries inside and set them down and opened the 1 piece of mail we received today which was addressed to Gideon. Strange, he never gets mail and today I got 1 thing only and it was for him…I opened the mail in the kitchen and just started crying again. It was his “Heart Hero’s” cape that I forgot I had ordered weeks ago as a gift from Their mission is to provide support to children and families affected by Congenital Heart Defects through the distribution of superhero capes, which they offer for free.

Clearly, he was less than thrilled to be wearing his SPIO suit again as well as having to be propped up for a photo shoot with mamas cell phone but I had to get some pictures. It’s no shocker that I don’t believe in coincidences so, to me, this was just a little gift from God to comfort me when a scary time hit with the scheduling and reality of his upcoming surgery. I’m glad he is already wearing his superhero cape proclaiming his healing from this defect, I just need to get some better pictures of it later but I was in a hurry to update you all on the scheduling so this was the best I could do in a pinch.

His surgery is scheduled 6 weeks from today on Friday, July 27th. We know very little at this point, we have a pre-op appointment and a consult with the surgeon (who is AWESOME and did his first repair as well) on the 17th so we will find out more then.

How can you help?

1. Pray for us. For the whole surgical team, Gideon, his surgery, his post op time, my parents who will have our big kids for a few days, the big kids, Bo & I, people who will be helping us. There is just a lot to pray about and we covet your prayers!

2. Donate blood. Gideon went through a LOT of donor blood during his last surgery. It wouldn’t be available to save his life if people didn’t donate so please consider giving blood to save his and others lives who need it to live.

3. We will be opening our care calendar back up that my friend Paige made for us the first time. Our biggest need will be help with childcare when Bo is home alone with the 3 big boys. We will need helpers to come over and spend time with them here, just hanging out so Bo can get a breather and have some help while he is here with them and I’m at the hospital with Gideon.  They are fairly easy going (well, they are WILD but they love basically everything so that’s what I mean by easy going) lol. Turn the sprinkler on out back, kick the soccer ball around, play board games, card games, do play doh out back, paint, do craft projects, work on school work, etc…If I really get on my game, which is unlikely, lets just be real, I’ll try to have a list of activities to do with the kids for anyone who is willing to come over and spend some time with them and love on them.

We will not be allowed to receive flowers, balloons or eat/drink anything in our room again when we are in the CICU (cardiac intensive care unit) and we don’t know how long we will be on that floor in recovery until he is stable enough to move to the post surgical recovery area before coming home. We do still have our paypal account to  receive donations to help cover any hospital related expenses. His surgery should be covered in full, We hit our out of pocket max for medical expenses from insurance back in January and we have secondary financial aid through Seattle Children’s so we don’t expect medical bills so donations would be more for helping out with food, gas, childcare, etc while we’re living in both places again.

I still hope to draw out his surgical plan so you all have a better understanding of just what he will be going through but I know you’ve read that before. Ok… I just did this… I hope it makes sense…

The 2 sections that are circled in yellow are missing from Gideon’s heart. He doesn’t have the septum (wall) that separates the left side of his heart from the right side of his heart, nor does he have the septum or valves that separate the top part of his heart (atria) from the bottom part (ventricles) of his heart. So they are going to open his chest, open his heart, build the center septum that divides the left and right sides of the heart out of gortex or something similar then do the same for the top and bottom creating the separating wall and add the valves so the blood will finally flow in the right directions. Right now, his heart is basically just a big open bucket where all of the blood pools together that is supposed to be separated and directed in very specific pathways via the valves and it pumps out incorrectly taking the path of least resistance which for him, goes straight to his lungs. So he has a band sewn into his pulmonary artery right now restricting the blood flow to his lungs so he doesn’t  go into congestive heart failure (suffocating because all the blood backs up into his lungs) which he will be growing out of in the next pound or 2 that he gains so that will be removed once they repair the heart and the blood flows properly.

I hope that makes sense! Either way, I need to get to bed. THANK YOU for praying for us! We will keep you posted on up to date prayer requests for sure! For the most up to date information, join his FB prayer page if you’re on FB. I plan to go live on that page with updates in person because that’s super quick and easy to do and you get to see us live! Feel free to share this blog and/or his FB prayer page with others, we love all the prayer we can get. Here is a link to his FB prayer group:

A terrifying answer to prayer…

Friends! You did it! We have another answered prayer to thank you for! On my last blog, I asked for prayer that we would get Dr Chen for Gideon’s surgery before he takes his new position heading up the best Pediatric Cardiothoracic surgery center in the nation at CHOP in Pittsburg. WE GOT HIM! The surgical team at Seattle Children’s were presented Gideon’s case this week and he has agreed to work us in before he leaves! This is FANTASTIC news! THANK YOU for praying!

It’s also terrifying news because that means, Gideon will actually, truly be having his big open heart surgery in just 6 weeks. I just barfed in my mouth typing that sentence. I am not prepared for this yet. Physically, mentally, emotionally. I’m not sure I will be prepared even in 6 weeks when the time comes, but he’s been doing so well, I’ve been happily living in denial about how soon his surgery would come and even pushed it out of my mind entirely at times to just enjoy the time I have been having with him now. I supposed that’s both a blessing and a curse. I enjoy my time with him, he is getting so fun and full of personality, I just love our time together without fearing what’s to come. On the other hand, I don’t think about what’s to come to try to come to terms with it in my heart and my head and have been living in oblivion about it.  We don’t have the actual date yet but I should know before the end of the week.

So now I guess it’s time to get serious about prep. Time to start making and freezing meals, making sure he gets some sort of a bottle at least once per day so he has lots of practice on how to safely and effectively drink from a bottle in case we need to do that. Time to start preparing my heart and my mind and my kids for another hospital stay. Schedule childcare for the big boys for after we  get home and are dividing our time between home and the hospital. Lots to do… 6 weeks to do it. Thank God & ugh all in the same breath.

Special thanks to Sara at  The Blessed Everyday Photography for these super sweet photos of Gideon she captured this weekend.

Update & Prayer Request 6/6

Not too much to update you all  on… Gideon received his SPIO suit (stabilizing pressure input orthosis suit) – basically a  super thick spanx with a hard plastic back panel and the therapist put it on him today. He was not thrilled. We are supposed to start with an hour per day working up to all awake time as he allows. He wasn’t a fan of it yet but hopefully he will be comfortable in it soon, he really did sit up so much better and have great control of his head with it on, it was very cute even if he was mildly miserable in it :)

His cardiologist called me today as well. He received the results from the last swallow study we did last week as well as my email message I sent him with his past 2 weight checks we had done and asked what our feeding plan was that I was doing. I told him Gideon is exclusively breastfed and is now getting 2 servings of either rice cereal with breastmilk or avocado with olive oil or coconut oil per day in addition to that. He said great, whatever we are doing is working well, he is growing great and right on track for where we want him to be for surgery. Yay!

Reviewing that with the therapist today, she did agree with the in patient therapist we saw last week who told me to add back the bottle, even if it’s just 1 per day so we have that to fall back on at surgery time if we need it. The goal would be #1 to breastfeed after surgery just like we are doing now, #2 would be to bottle feed and last resort would be to put the NG tube back in if we had to. But if he doesn’t take a bottle, we have no backup so he does need to work on his skills of taking a bottle with thickened liquids so he doesn’t aspirate. Ok. Great. Yes. I can fit this into the schedule. Currently, his is scheduled to breastfeed 6 times per day at about 30 minutes each. I’ve now added pumping 1-2 times back in per day just to get enough milk to make his daily cereal which takes 15-30 min. In addition, he gets fed cereal which takes about 15 min per bowl twice per day and now I need to pump at least 2 more times per day to make enough milk to add bottles in too. Last night, he ate 3 extra unscheduled times and I think I got about 3 hours of sleep total. With the added feedings & pumping sessions and the decrease in sleep, I’m pretty sure I won’t be able to keep up anymore. I can’t breastfeed plus bottle feed plus feed solids mixed with breastmilk, get no sleep and still have enough energy to feed the both of us. Darn, this would probably be a great weight loss plan if I wasn’t eating so horribly myself. I have at least doubled my water intake lately, if not tripled and need to keep that up and need to figure out some more convenient foods that I can just grab and eat for myself. Currently I eat tillamook moos, costco trail mix, cashews & almonds and dinner for the most part. Then unhealthy snacks after dinner. Naughty me. I’m working on trying to figure out when I can get some more sleep, increasing fluids and will get creative with healthy eating snacks and apparently more TV time for the kids so I can have more time to pump,  measure, feed & bottle Gideon.  I think just feeding him alone takes me about 6 hours per day right now if I add it all up together. Then add to that his therapy time, my other 3 boys are getting sorely neglected right now. They are so patient and kind with me about it though, they don’t seem to harbor any resentment toward Gideon at all which I’m so thankful for. They just need to get out more so I need to work on making Gideon a bit more flexible. He is used to sleeping in his bed for all his naps and I’m just not up for holding him for an hour of crying if he misses it so I try to make sure we are home for them which means the kids can’t just go play at the park all day long. But,  it was good news…. well that part was, he is growing well, I just have to find a way to maintain that.

Other good news, he is finally discovering the right side of his body. He is enamored with his left hand (the therapist said I need to get a rattle of some sort or something colorful with texture that I can strap to his wrist so it will be more therapeutic for him rather than just staring at his boring hand, he will have something else to explore so I need to look into that. But I’m so glad I caught him sucking on the fingers of his right hand earlier today laying on his right side on the mat. That’s progress too! I also received some bad news today. The cardiologist informed me that the surgeon we have chosen to do his next repair, which is the same surgeon who did his first and is also the best of the best in the state has taken another job. He is moving to Pittsburgh to be the head of pediatric cardiothoracic surgery for the #1 pediatric cardiology department in the entire nation. Yeah, exactly, he’s the best of the best. And WE WANT HIM. We liked him  so much, not only is he the best of the best in his area of expertise, he is just an awesome dude for the 2-3 hours we’ve got to spend with him. The hope is that we will be able to sneak in Gideon’s surgery prior to when he leaves in 2-3 months but our cardiologist wasn’t sure. He is going to reach out to him and request that we get Gideon’s repair done before he leaves if he will do it either end of July or 1st of August. Based on this new information, we may find out our actual surgery date earlier than we planned. We were originally going to find out when he was scheduled probably about a week in advance but we might be able to get some more notice now because the surgeon is going to quit doing surgeries and start handing the department over to whomever else is coming in. Boo.

A few prayer requests:

1. His surgeon will fit us in for his 2nd repair before he leaves either at the end of August or first of July as long as Gideon is stable throughout.

2.  Gideon continues to gain weight, even at a faster rate since we only have 8 weeks left to do it.

3. I get more sleep and can keep up with his feeding and therapy schedule as well as enjoy my other boys more and stay sane, or at least fake it well. I’m also starting to THINK about trying to plan and prepare advance meals for when I/we are gone for his next surgery stay. We are planning on him being in the hospital for up to a month and want to be prepared for that and just hope and pray he flies through exceptionally well and we get blessed by getting out early. I’m only in the thinking stages at this point and will be adding dates to our care calendar/meal train when the time comes if anyone desires to help out in this way.

4. Our marriage.

5. Preparation for and help with the time I/we will be gone again at the hospital. We have learned our limitations with our last stay and are much more open to help as we prepare for this next round and want to set ourselves up for success and will do our best to communicate our needs and pray that there are volunteers or help to be hired who can come help us out, mostly with the boys at home when only 1 of us is at home and the other is in the hospital. Also when we bring Gideon home again and we adjust back to all 6 at home again, hopefully with no medical equipment and our only restriction with him  being ‘sternal precautions’ meaning our only concern is how he is picked up, held, positioned, etc. which we know for sure he will have for a minimum of 6 weeks after surgery.

THANK YOU THANK YOU THANK YOU. You guys are our life support both physically and spiritually and we are so immensely thankful for all your prayers and your help.

So much love and many blessings to you!