Author: Kari

Wednesday Prayer: For all congestion/boogers to clear up! NO SICKNESS!!!

We had a great night last night. Both of us slept for most of the whole night. It was fantastic. He had his first oral feeding today and took 15 ml which is the most he’s ever taken orally so that’s fantastic. The Occupational Therapist stopped by to let me know she realized why he had a bad feeding day yesterday, it was the day after he was taken off of high flow air and babies apparently always have bad feeding days the day after they are removed from that as they learn how to breath 100% on their own and have to exert more effort to breathe, it leaves little energy left for anything else. He did have a couple big poops too which take a lot of energy. LOL.

He very quickly sucked down about 15 ml from the bottle this morning then took a break to poop then took a break to poop again so we just took a break to change his diaper, get him awake and alert again (eating is EXHAUSTING and he only stays awake for up to 10 min because it’s so much work for him) so we took a break for a diaper change and to wake back up, etc. He took the opportunity to poop a 3rd time on mama. Nice fella, thanks for that morning gift. I do celebrate all little victories and pooping is certainly one of them but not so much a party when it’s on me.

He does appear to be more congested today. They have suctioned him and got a little bit of snot, he also had an eye booger this morning so of course I’m freaking out about him catching a cold. I am the only one freaking out about it though. Not only could this extend our stay here quite a bit, it could be a massive setback for Gideon if he does catch a cold. I had a lengthy discussion with the cardiologist about how to best avoid germs with 3 other kids at home and co-op and church, etc He said we just have to make a choice. Do we want to sit in our living room quarantined for 6 months until after his next surgery to do our best to keep everyone in the family healthy or do we want to have the best hand washing practices ever, make sure we are all completely vaccinated do our best to avoid germs and try to enjoy life for the next 4-6 months while we wait for his complete repair? We will have to decide that. Gideon should be much bigger and stronger after he heals from his next surgery and won’t be nearly as fragile as he is right now, but for now, at weighing only 5.5 lbs and being 3 weeks old, it’s best to quarantine him a bit more until he gets a bit bigger and stronger and more stable in a cardiac/pulmonary way which he will only do has he grows bigger and bigger and grows into his pulmonary band that’s been placed inside his pulmonary artery. Right now, that band is a bit too big for him so he needs to grow into it so it adequately restricts the blood flow but it also has to last him 6 months until his next surgery when it will be removed when they rebuild the inner walls of his heart so it’s just a balancing act.

Thank you for the continued prayers and support. We are praying for a congestion free day and good oral feeds. They really want to change his tube feeds up a lot today and tomorrow and we may have to put the brakes on that just a bit because I can tell how it affects him going from 120 minutes down to 90 like they did yesterday and today we’re going down to 60 and they want to push him to 30 tomorrow so we’re more set to go home. I do not, if he shows any more discomfort or congestion, we need to slow it down some. I’m totally fine with doing tube feeds over 60 minutes at home for a week or 2 until he grows a bit more and can see the cardiologist again to change it up. We don’t need to rush all the feeding stuff just to make it easier when we get home, we will have help at home. The biggest help will be having people play with the big kids. Board games, ball outside, art projects, balloon catch, pretty much just any kind of attention and entertainment for the big kids would be the biggest help so I can continue to pump, wash everything, fortify his milk, make bottles, prepare tube feeds, push meds (he only gets meds twice per day so that actually will only take about 10 minutes of my day total), change diapers, count respirations, and try to get him settled back to rest again so I can spend some time with the big boys too. And probably fold laundry. Washing and drying it is super easy for me to do but getting it put away used to be nearly impossible. Any expectation of having that done now is completely gone. I need to buy some new laundry baskets and label each of them so everyone has their own basket and we will likely live out of those :) LOL.

It’s hard not to  get upset by having another “backwards day” in regards to feedings by mouth. Gideon is allowed to have 3 feedings by mouth per day but he’s only allowed 10 minutes per try, 15 at the absolute most if he’s doing really well. He should be eating about 60 ml between his 3 oral feedings and today, he totaled 7 ml. Seven. That’s all. It was VERY disappointing. I tried not to get upset about it though realizing it was a rough day, we didn’t really get any sleep last night, we were tired, and for some reason, he just wanted to chew on things today. The occupational therapist checked for a tongue tie which he does not have (thank goodness), for some reason, he was just being very lazy chewing rather than sucking to actually get milk from anything.

I was really disappointed but decided to focus on the positive things from the day instead.
– We calculated all his calories lost from his by mouth feedings and made up for them in his tube feedings.
– He had a stable day with heart & lungs.
– I had a great meeting with some management and nursing staff here that was very reassuring.
– He got a ‘wedge’ today to help with his position while sleeping. They had just raised the head of his bed but he would sink down into the crack and his head is so big, he needs some additional head support too so he got his wedge and a head roll to help his airway while sleeping.
– He maintained fantastically off of the high flow air.
– He graduated from an ultra preemie nipple to a preemie nipple on his bottle
– He gained 25 grams!!!!!!!!!!!!!!!!!!!! 25 grams!!!!!!!!!!!!!!! Yesterday he had gained 5 grams, today, 25! YESSSSSSSSS. This is very exciting for me.

Prayer requests:

– He has the sound of boogers. He’s been suctioned 3x today and got a little bit out but not all  that I can hear in there. Boogers are what caused his huge setback last Saturday and got him put on the high flow air.  He can’t afford to have boogers so please pray his airway remains completely clear and any boogers or obstructions would be cleared. Also that his O2 saturation would remain the same as it has been.

– Pray for improved cardiac output and rhythm. He’s done very well today but still throws some wonky things from time to time and I would like his rhythm to be perfect, as perfect as it can be for having a complete AV Canal Defect that has yet to be repaired. :)

– That his by mouth feedings tomorrow are successful. That he will use his tongue the way he should to actually suck from the bottle not just chew on the tip of it and get no milk. That he gets fat! :)

– Rest for tonight for everyone in our room. I slept for 2 hours last night and got about a 15 min nap in today so hopefully he will behave very well as will the little gal in the room with us so we can all sleep peacefully all night long.

That’s a lot of prayers! Thank you for being specific with us to pray for the best for him!

This is his crib. The ‘wedge’ is quite a monstrosity of a thing. That won’t even come close to fitting in his co sleeper at home… we have to get creative with a safe sleeping option for him.

Well, we had a bit of a rough night last night. We got a roomate who had quite  a bit of activity going on in our room until about 5am so we settled in to sleep around 6 when it all died down.  Then we were up at 8 for the day. We are having a sleepy day which is not ideal for Gideon to eat and grow. He didn’t take anything from his bottle this morning which is quite a bummer. When I asked the cardiologist last night how much weight he needs to gain, he laughed and said “any!” As long as he continues to gain every day,  that’s all that matters. Yesterday, he gained 5 grams and the team was very excited about that. They changed his feedings today to be more in line with what we will do when we go home (feed every 3 hours) so we’re hoping and praying for a successful feeding day between his 2 bottles, 1 boobie and all the NG tube feeds. They decreased the amount of time for his feeds so rather than getting a slow drip 24/7, he is now eating for 90 minutes every 3 hours so his tummy can grow a bit and we can get on more of a newborn schedule. He is currently taking his first 90 minute feed right now and either needs to poop or is having a bit of discomfort with it, I’m not quite sure which. He keeps falling asleep but grimaces every once in a while and pulls his legs in so either he has a bit of a tummy ache from it stretching out for his first big feed (45  ml over 90 min) or he has to poop which he hasn’t done yet today and is quite possible.

We  did get him off of the high flow air yesterday and he did great. Yesterday. He is showing a little more work to breathe today but that’s also to be expected with his increase in feeds so hopefully as he digests, he will calm back down again. In order to get discharged, which could now be as early as Friday if he does well over the next 3 days, he needs to gain weight everyday as well as not have any added work of breathing. We got to take his ‘dots’ off today which was good, those are the round stickers next to his eyes that held the nasal cannula on his face so it was good to see those go and the pole was just removed from his room that had the oxygen/air/humidifier on it so now we have more room in here to party!

I also attempted, unsuccessfully, to place his NG tube yesterday. We wanted to give his right side a break and attempted to get it in the left nostril instead and I couldn’t get it so the nurse tried and she couldn’t get it either. I tried again on his right and couldn’t get that one either so had her try and she of course got it to go in after some magic on her part. I’ll have to try again today to make sure I can do it successfully before we go. I am comfortable with how to check placement of the tube now and feel good about that and flushing it out and checking the PH balance of his stomach contents. Plus I have  a NICU nurse friend who lives pretty close and has offered to help if need be who can probably place the tube sleeping with her eyes closed. THANK GOODNESS for all the help people offer. I was a sweaty, shaky mess trying to get that tube in yesterday. I knew he would cough and gag and choke but I didn’t think I would get stuck with resistance so bad and not figure out how to get around it. Hopefully today will go better.

Prayers for the day:
– Rest for both of us. He needs to eat and get fat. I need to sleep and get skinny. LOL.
– Respiratory comfort for him. A good rate with no work of breathing.
– Cardiac stability. He is still throwing PAC’s but hasn’t had a scary rhythm since we got here to the floor so I’m glad that seems to have been a 1 time thing.
– Prayers for daddy with the big boys at home. They all got a break today while Nana & Poppi had the boys for the day but they will be back home soon and it’s a lot of work. Prayers for peace and joy in our home please.

THANK YOU!!!

Here is his cute little self right now. He had a big feed and I snuggled him right to sleep. It’s time to wake up and eat again now though. The less stuff he has attached to him, the cuter he looks!

 

The picture below is how Gideon spent most of the day yesterday. I was worried he would be up all night partying but he certainly wasn’t, he spent most of the night like this as well. You’d think I could have completed my taxes, read a couple of books, ate, rested and just hung out but of course that’s not how it goes here. I did eat which was FANTASTIC after not having eaten enough lately and did actually get a little work done on taxes but we snuggled most of the day away because he sleeps so comfortably in my arms so we snuggle a lot. Plus I pump, wash the pump, wash the bottles, prepare the bottles, fortify the milk, heat the bottles, change the diapers, I organized our room just a little bit since it seems we will be in here for a week and even had a fantastic shower last night in our private bathroom. It looks like we will be getting a new roomate today so that will likely be the end of having a private bathroom to use which is a bummer but whatever. We had a roomate yesterday but it was a pre-op patient only here for a few hours which was good because her family smoked and I was going to ask to have one of us moved because I don’t want Gideon in a room full of second hand smoke (nor do I want to be in that environment) but she was only a short term resident in our room. There is now a non english speaking family of 4 that just walked in waiting for their patient to arrive in our room who will apparently be rooming with us now. The curtain isn’t drawn between the 2 beds so they are all 4 sitting on their bench seat just staring at me sitting on my bed typing this up right now, it’s pretty funny actually. It makes me very uncomfortable having children in the room with Gideon. I so desperately want to take Elijah, Moses & Solomon to Co-op this week since we missed week 1 but there was so much sickness that went throughout the co-op families after last week, I’m too scared to take them in that environment and we will likely skip our 2nd week of school this week too which sucks. They want to go so bad and I want them to go so bad, it’s so good for us all but it’s just so dangerous with the bugs that kids show up with and pass around, we can’t take the risk of being exposed to anything right now. A common cold could literally kill Gideon so I think we will probably maintain our quarantined status like we have been lately with visitors at the house and family outings as well for a while to protect Gideon and all of us.

We had a pretty productive day yesterday. They removed his PIC line (the IV that went from his foot directly into his heart) which we found out was unusable anyways as most of it had coiled up and started coming out already. They went to administer some medication in his PIV line (the IV in the other foot) and found out that too, was unusable so that was also removed. His ART line (arterial line in his arm) was removed yesterday so that’s 3 different cords that are now gone from him! The nurse noticed he still had stitches from his chest tubes and called surgery to have those removed since it’s  been a bit too long so the surgical nurse came up, took a look, did a quick snip and all the stitches just popped right out, easy peasy. Then I got to oil him with Frankincense where the stitches were. Now he smells yummy and everyone wants to know why :) He will be cleared to have a normal bath in 24 hours and probably be able to wear some clothes soon as well. He has socks on now that his feet are accessible which is adorable. His 2 chest tube sites look fantastic and he peeled off the rest of the glue from his sternotomy overnight and that incision looks great as well.

His next milestone to hit on his road home is to take off the high flow room air. This has been a hot topic of debate among the team and has been interesting to hear the different perspectives about it. They all agree that from a respiratory standpoint, he doesn’t need it. He is over oxygenating as it is because of the size of his pulmonary band compared to the size of his tiny self so it’s not for respiratory support. The cardiologists say it’s so he doesn’t have to work to breathe so he can focus all of his energy on gaining weight and not have to use any effort breathing. The cannula is out of his nose more than it’s in his nose so the nurses and internist and some other doctors have seen how well he has done without the high flow on and think it’s just a very heavy, awkward unnecessary tube to have him hooked up to because even when it’s on his forehead or in his mouth, his work of breathing doesn’t seem to be increased at all. They plan to “sprint” him off today (turn it off for as long as he manages status quo) and see how he does and it he can just have it off entirely. We will do that after noon feeding/vitals. They are also allowing (ie: FORCING) me to place an NG tube today so I can get comfortable with doing it. Comfortable? Shoving a foot long tube down my 5 lb babies nose into his gullet? Yeah. That’s something I’ll get comfortable with. Lol. We laughed about it when I told the doctor I won’t get comfortable with that ever but I know I have to so I’ll do it. I would rather do it here with a nurse by my side then at home alone.

They also told me there is a CPR class available today for parents and they like the parents to have at least some CPR skills just in case. I told them I’m an EMT and have been an American Heart Association CPR instructor for about 15 years so they asked me if I would teach the class for them and administer the cards. Lol. I did ask about doing CPR on a baby with a sternotomy because I have considered it. His sternum is wired together and I would imagine it would make it difficult to do CPR but they said no, we just do CPR as normal like we would on any infant.  Now I can put it to rest in the back of my mind to never have to think of again since I know it’s the same with the sternotomy and that’s a skill I will never have to utilize with my own kiddo.

Saturday, when we tried to breastfeed it was an awful nightmare. We both just ended up crying, he missed an entire meal which I thought was totally critical to him as his only goal is to gain weight but they weren’t including his bottle/breast feeds in his daily calorie load so that was good to learn. When we tried yesterday in a calm, peaceful setting when he was actually hungry, he got his first good latch and stayed on for a bit ever so slowly getting some milk. It was slow and it was a process but he did fantastic and we were both very pleased with the results as were his doctors. They have decided to double his bottle feeds today to see how he does. He does work to breathe quite a bit when taking a bottle/breast and is usually SPENT after getting 10ml (that’s equivalent of 2 teaspoons) from a bottle so I’m hopeful that if we shut off his tube feeds an hour before he eats that he will get hungry enough to take more food without falling asleep after 5 minutes of eating. It’s so strange here to not work on getting him on a schedule. Normally, we sleep train our babies and will wake them up to eat and play every 3 hours. That was our plan with Gideon as well which his cardiologist was in full support of before we knew about the additional cardiac anomalies they found at birth. Now that whole sleep training plan is currently out the window and if he’s asleep, he gets to stay asleep for as long as he will sleep since he can gain more weight when he sleeps so we don’t wake the sleeping baby here. The awesome thing about the NG tube is that he’s getting food in his belly 24/7 so he never wakes up at night to eat since he’s never really hungry. The bummer thing about that is that he’s getting consistent food in his tummy 24/7 so his tummy doesn’t have the hunger signal and he doesn’t do well at taking a full feeding all at once because his tummy won’t grow as quickly on continuous feeds as it would if he were on a 3 hour feeding schedule. We will be transitioning to something closer to a 3 hour schedule today as they increase the bottle feeds and turn off his feeding  pump for 1 hour every 3 hours and see how he does.

In addition to getting off the air and Bo and I training on the NG tube placement and pump operation, Gideon needs to gain some weight. They pulled up his chart at rounds today to check his growth trajectory, I joked that it was probably a flat line at this point and asked how much weight he needed to gain to be considered for discharge. They laughed and said any weight. Just a consistent upswing in his weight even if it’s very minor, as long as he is getting the calories he needs to help him to grow, they consider that adequate and there is no actual weight he needs to reach to be able to leave. He has gained which is good, I don’t think he’s quite hit 5 lbs 3 oz yet but maybe tonight… They weigh him every night and may start having me do pre & post breastfeeding weights as well so they can measure what he gets from me and supplement the rest with fortified milk through his ng tube.

I’m glad you all enjoy the updates and the posts. They are good for me to write. It’s actually pretty lonely up here, just him and I in our room (well, there is now a spanish speaking, spanish tv watching family of 5 in the room with us) and I don’t really leave the room because the nurses station is all the way down the hall and they won’t really hear him if he screams/cries unless his alarms and monitors ding and beep so I don’t like to leave him unattended and all alone in his room. Bo is so busy with the boys at home, we don’t really get a chance to talk so all my processing is done writing everything out on the blog which makes me feel better.

Prayers for today:
– Gideon to gain weight
– Successful weaning “sprint” off of the high flow air with no added work of breathing and good respiratory status.
– Reduced amount of PAC’s & PVC’s, excellent cardiac output with a stable rhythm.
– Bo & the boys at home. It’s a lot of work and they can use all the help and prayers available for an AWESOME day with joyful hearts and happy attitudes.

THANK YOU THANK YOU THANK YOU!

Want to help? Pray! Please! Lots and lots then a little more! :) Give blood! Gideon would be so thankful if you gave blood to help save lives like his! We do have a care calendar that we will be adding more needs to as they arise: https://www.mealtrain.com/trains/7nmnw1 and a paypal site where you can donate and our family will receive 100% of the donations with no fees to help with the cost of food/gas/medical expenses. Here’s how: Go to 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.net

We slept! I prayed and prayed and prayed (and you all prayed, THANK YOU!) for stability and rest and we had stability, for the most part and rest, for the most part last night. Enough so that I feel human again. Lol. Sleep deprivation seriously does a # on me, it turns me into a complete maniac so I’m glad we got some sleep last night and his heart calmed down and was stable all night. We went to bed around 8pm and got up at about 8am and only lost about 4-5 hours of sleep between then with arrhythmia’s, labs, vitals, alarms, lost binkie, etc. so it was a good night. Today has been good as well. Rounds here are quite a bit different than they were back in the ICU which is a bit sad. I liked having the whole team all together to all give input on things and here, I just had 2 cardiologists to discuss things with rather than the whole team but they were both very reassuring to me today. There was some debate about whether to take Gideon off of the positive pressure air that he is on right now and the cardiologists said he needs to keep it on for a few more days. There is no respiratory reason causing it, it’s just for basic support for his body so that his work of breathing is less so he burns less calories to breathe. Really. Breathing is even aerobic for him and his #1 goal in life right now is to GET FAT and gain some weight so everything they can do to support him in doing that, they are going to continue doing. For now, it’s keeping the positive pressure air going for him so he doesn’t have to work at all to breathe.

The Cardiologists are not concerned about his ‘hiccups’ and bad rhythms he has slipped into. They look at him, he doesn’t turn purple, he doesn’t get uncomfortable, his heart just goes wonky for a short period and seems to recover on it’s own, his labs are good, his NG tube placement is good, his PIC line placement is good, there doesn’t seem to be much of a reason for this to be happening. It’s not a side effect of getting off of the Milrinone, as a matter of fact, he would be more likely to have these strange things while he was on the Milrinone. So I just try not to look at the monitor ever unless it beeps and bongs for some reason and just watch him, see how he is doing, his color, perfusion, work of breathing, comfort level. And for the most part, all of that is just fine. Unless he’s trying to poop. LOL.

We are starting to get a routine down as much as we can. Adjusting medication times to fit what would be a good schedule for us to have at home and scheduling his 3 oral feeds per day. Right now, it takes about 2 hours to get the morning routine down, pump, make a bottle (with older, frozen milk that needs to be fortified), fill the syringe for the NG tube, change out the NG tube feed, feed him the bottle, give him all his meds by mouth, wash the bottle and pump parts, snuggle and get him settled again. Just enough time to start for the next round. LOL. We will get faster at it, today was his first day of taking all his meds by mouth so that was good. Add in changing diapers and doing a general wipe down of him and that’s the 3 hour mark when it’s time to start all over again! Lol. It’s good practice though.

I love my nurse today. She knew I was upset and exhausted last night and didn’t get a chance to have dinner and just went to bed hungry instead. This morning, I went to the cafeteria to get breakfast but made  a phone call on the way and they closed down while I was on the phone so I missed breakfast as well. She brought me some cheese, crackers & apple juice to go with my HUGE bucket of water that I keep well filled so I had something to eat while I wait for lunch to be available. So kind of her. She had 2 preemie babies herself so she’s totally comfortable with Gideons size and very compassionate about my fear of him, especially breastfeeding. Hopefully she will be around to hang out and help later, she has 3 other patients today, 1 of whom requires nearly complete care until they are taken to the OR for their transplant surgery in a couple hours so hopefully she will have some free time after that.

I’m participating in a healthy living challenge with a group of gals from co-op which has been awesome for me since the first of the year. I set my goals to be attainable knowing I would be having a baby and spend a few days as an in patient in the hospital but wanting to maintain my health goals I was working so hard towards while pregnant and not wanting to fall completely off the wagon after I had him eating everything and anything I could find and never exercising again so it’s been very beneficial for me. Today, I see they have blessed our families with having some freezer meals prepared for us. There are so many people helping us out in so many awesome ways, I wish I could express our gratitude. This is so awesome, what a sweet blessing for our family. Thank you ladies.

I do plan to add more stuff to our care calendar, I just don’t know what or when the needs are quite yet so I will add things as I find out more, as we return home in a week or 2 and more needs become apparent to us. There will be LOTS more opportunities to help out if you so desire, I think we’re in for a bit more work than we had originally expected :)

Today, our prayers are to remain STABLE, rest and get fat. That one’s just for Gideon, not for me. Heck, you can pray for me to get skinny if you want, LOL! HAHAHA. THANK YOU for the prayers!

Hahaha, my little man in a big bed for his transfer. This is his new bed that he will live in until we go home. He looks so small in here!

This is our new room! It really is a beautiful room with more space and more comforts. I just don’t like it. LOL. It’s new. It’s different. It’s scary. I don’t know the nurses or the doctors. There is an emergency page going out right now for a room in this wing, ugh. Gideons alarm just went off. The nurses aren’t close to his room like they were in the ICU. Yeah, there’s a fridge in here and we are allowed food and it’s a different view out the window but it’s all scary and new. I’m such a creature of habit & routine, apparently I really don’t like change much because I’m just being a big, fat weenie today! Lol. At least I can laugh about it while I cry about it. This is a double room so there is the potential that we will have a roommate, not even necessarily a baby, I’m sort of hoping we don’t get a roommate though because I would rather have a visitor and still be able to use the bathroom in here than have a roommate and not be allowed to use the bathroom if it’s not an infant patient.  If the bathroom has to be shared with patients who will actually use it, families are not allowed to use the bathroom. If they are both infants, we can work out the bathroom usage between the families that share the room. At least we got the window side of the room which also has the bathroom as well. The bed is big, plenty of room for me to sleep comfortably, it doesn’t feel as cold as our ICU room was. There is no longer a curtain between Gideon and us so I don’t have privacy for pumping the way I did in the other room but that’s ok.

Gideon was a FUSS BUCKET during the transfer and wore himself out so he is resting again. I probably should be too but I’m not yet… maybe soon. I need to pump but I have to wait to get a new pump because they don’t transfer between units so I have to wait. We tried to nurse at lunch. It was a nightmare. I just don’t want to do it. He NEEDS to eat and grow and get strong, fat and healthy but we are not good at nursing, they were preparing for the transfer and trying to switch his beds while I was trying to nurse in the chair having to move so we didn’t get rolled over, he was too sleepy, I got too frustrated and upset that he missed out on a whole meal for lunch and so we just cried together instead of him being able to enjoy a meal. I would just much rather pump at this point and bottle feed him, I’ll discuss it with the occupational therapist again when I see her on Monday.

They disconnected his NIRS monitor so both of those are completely gone now which is good, his toes are cold again which hasn’t happened for a few days so that’s sad but they also put a hep loc on his PIC line so he is no longer connected to the IV lines on the pole and just has a hep locked IV in each of his feet so he has socks on now! They told me I could even put clothes on him if I want to but he still has the feeding tube, the high flow air, the EKG monitors and the o2 sat monitor so there are still quite a few things connected to him so I’ll probably wait until he gets disconnected from the air at least, then maybe I’ll get some clothes for him if he can wear them then. I had a bunch of stuff packed in our original hospital bag but that’s all back at home now since clothes weren’t allowed until now.

Ok, I’m going to lay down for a bit I think then consider what I’ll do for dinner tonight since I can sit in my room and enjoy a meal for the first time in 3 weeks now. I’m starving too so hopefully I’ll have something good :) He will get dinner tonight and hopefully we will both sleep great tonight… who am I kidding? In a whole new place with him farther away from me and the nurses farther away from us… it’s scary!!! But it’s good! I’m thankful for the change even if I’m resistant to it and terrified of it. It’s good. God is good. We are good. The big boys at home are good, Bo is good, we are good…… :)

I asked my dad about a week ago what gift he would like for his birthday (which is today). I was very specific and told him I wanted to go to a brick & mortar store, buy a gift that I could bring home, wrap up in a box with gift wrap and give to him for his birthday that he could unwrap and appreciate. He said the only thing he wanted for his birthday was for Gideon to get well and head home. I said of course, but what GIFT do you want? What present can I buy that you don’t already have that you need or want. He said again that he wants Gideon to heal up.

Gideon delivered!!! We had rounds early this morning and the Dr at the end of rounds smiled at me and said “today, you will be transferred.” Uhhhh, um, WHAT THE WHO!?!?!?! Excuse me? Who? Being transferred where!? When? Me? Us? TODAY!?!? No!!!! Out of the CICU!?!? No thank you!! I nearly cried  and did make her repeat herself. In my defense, she speaks with a very thick African accent so I did need to make sure I heard the right thing. They all laughed (3 doctors, 1 nurse, a pharmacist, nutritionist & internist) knowing I’m just terrified of caring for Gideon although he is hitting all the markers he is supposed to hit on the progression of getting well. They all assured me he is doing very well and we need to start transitioning to prepare to go home eventually. This mama is not ready. He is still only 5 lbs (plus a half), he still has lines and wires coming out of all over him (although they did get rid of his cranial NIRS monitor), he is still very fragile and needs to keep his heart rate down (not scream and cry) or it send him into respiratory distress and all heck breaks loose with all of his monitors. But his labs have all been good for the past few days, he has successfully weaned totally off of the Milrinone, his Lasix is by mouth now, he is on no IV drugs anymore at all though he still has 2 IV lines in, he has remained stable, gained weight, successfully latched and nursed once, takes feedings by mouth excellently and hasn’t had any other setbacks or hiccups really since last Saturday. It is time. For him. Not for me. LOL. The nurse told me this morning that now I can order room service and have it delivered to me in the room because we will be able to eat and drink in our room. Awesome! Except I’m still trying to eat healthy and walk the hospital halls for exercise to continue the trend of dropping some more weight since I did so well with that during pregnancy, I’m trying to keep the ball rolling in the right direction. I don’t think a big fat plate of biscuits & gravy with a side of bacon being delivered to my room for breakfast would bode well for maintaining that momentum but it sure does sound good.

This is his plan of care for the day: We just got word that our estimated time of departure will be between 1-3pm this afternoon. Yay! Scary!! They will remove 1 of his 3 IV lines as well as his Renal NIRS monitor because that’s one other thing they don’t monitor on the floor is NIRS so that has to go as well. His toes have been warm for 4 days so that’s huge, they used to be little purple swollen ice sausages, now the swelling is gone, they are skin colored and have stayed warm for days.

So today will be another big day for us. We are moving. I told my heart mom friend in the lounge and she was excited for me  but sad to see us go too. Our other friend left yesterday, her other friend is also going today, hopefully she will be right behind us and we can hang out in the new unit together when she gets released (again) to “the floor” which should be in the next day or 2.

I’m TERRIFIED. I’m also excited he is making such good progress and gets to graduate out of here. Taking a leap of faith trusting God for his maintained stability, growth and healing and looking forward to what’s ahead for us! It’s moving day! Yippee!!

Gideon enjoyed his bottle for breakfast and promptly went right back to sleep. Of course… He decided he didn’t want to sleep AT ALL last night and we both finally settled in around 6am for the night. Oy. I was up at 8 for rounds, he had breakfast and went back to bed. Maybe I’ll nap today too. Taxes? Meh. My book? Meh. THIS is how days go by so quickly in the hospital with nothing getting done…  :)

I do believe God is answering prayers in a might way and it’s because all of you are so diligent in praying for our specific requests. We can’t thank you enough for walking this journey with us and holding us up in prayer. Today, we pray for successful removal of his arterial line and a smooth transition into our new, non intensive care room and for peace of mind for me and comfort for me in handling more of his care on my own. Of course he still needs to behave and have excellent cardiac output, grow and remain stable too.

Thank you thank you thank you and a very special happy birthday to Poppi!

Awwww I miss my boys already. I dropped them off at my parents house to make the swap with Bo back up at the hospital today. I cried before we even left home having to leave them again. I may get overwhelmed and frustrated and want to jam a fork in my eye at some point on most days but my boys are my happy place and it makes me so sad to leave them again. They look forward to spending time with daddy though and are excited for the swap. Daddy is more fun than I am. LOL. The fridge is stocked, a couple of meals are scheduled and there is some help setup for daddy to hopefully ease the load of being a full time, stay at home daddy to 3 boys which is a lot of work that he’s not used to for such long stretches of time alone.

My mom allowed enough time for Bo and I to even get some time together and go out to lunch to catch up. It was nice to just be able to sit and chat. We don’t have a chance to connect much when we’re separated as someone is busy at the hospital with Gideon, the other is busy at home with the bigs and we’re both SPENT at the end of the day when the kiddos are all in bed. Tonight for example, I had planned on helping with Gideons bath from 7;30-8:00, feeding him and having him in bed by 8:30 or 9:00 at the latest so I could update, pump & be in bed and asleep by 10:00. Well, our plans are all at the mercy of the nurse who takes care of Gideon and the neighbor boy (who requires a lot more care than Gideon) and it’s now 10:47 and I’m just getting around to writing a post. That’s ok though, I had a couple hours of good snuggles with him which were fantastic. I’m so glad that he’s comfortable with me and will generally just go right to sleep in my arms. 
This was even before he had his dinner since dinner was so late tonight! He is comfortable with mama and will chat with me briefly then go right to sleep. So sweet.

They took his NIRS monitor off his head, he looks so much cuter with 1 less sticker. We also took the splint off his foot tonight and didn’t replace that. He had 2 more blowout diapers, even in the bigger newborn size diapers, maybe he’s almost ready for size 1 diapers! But he had got some poop on the splint so we took it off during bath time and the nurse decided to leave it off since he wasn’t kicking and fussing around so that’s another less thing attached to him. He actually has legs again now and cute little toes, he’s not just a big blob of swollen fluids and looks a lot more like a little person now.

Medically, he had a fantastic day! His Milrinone is OFF, it’s been over 12 hours now and he has done awesome. His high flow air is at 2L, down from 4L the other day which is great. It’s humidified positive pressure so it’s more powerful than just a nasal cannula to help him maintain a consistent respiratory rate, I’m not sure when they play to shut that off to see how he does but they really wanted to focus on turning the Milrinone off first. The afternoon nurse even mentioned getting transferred which was the first time anyone has mentioned that which is both exciting and terrifying. He did throw a lot of PAC’s this afternoon which warranted a visit from one of the ICU doctors and a lengthy lesson for Bo and I about the P wave, QRS complex and T wave and PAC’s vs PVC’s, all of which I SHOULD know about from being an EMT but I’m not good enough with a 12 lead to recognize it all, especially because the way the leads are right now, it looks upside down to me. I’m used to seeing a rhythm in a very specific way because we attach our electrodes “white to right, red to ribs, smoke over fire, green left over” so we are always looking at the same direction and here the leads get moved every 2 days so sometimes it’s upside down on the monitor from what I’m used to and I don’t know how to read a rhythm very well. I can pretty much look and see if it’s good or bad but that’s about the extent of my cardiac rhythm interpretation.  LOL. We weighed him tonight after his 2 blowout poops and he has even gained weight! At birth, he was 5.17 lbs which they rounded up to 5.2 lbs. Tonight, he weighed in at 5.55 lbs! YAY!!!!!!!!!!!!!!!!!!!!!! Good job buddy!!!! Celebrating every victory!

As hard as it is to be away from my bigs and Bo, it’s good to be back here with Gideon. Rae, our occupational therapist “made me” nurse today. Ha. Gideon is still so small and they measure every ml that goes in and every ml that comes out, he’s got tubes and wires and monitors, no head control and is just small and scary for me. I didn’t want to try to breastfeed him. I’m totally fine with pumping and feeding him out of a preemie bottle, it’s very cute actually. But the goal is to be able to breastfeed (I guess) when we go home so we need to practice to see if we can get it down and do it safely and he can behave the way he is supposed to. So while it was terrifying for me, he did really good for his first try and we will continue to attempt once per day and cut out 1 bottle feeding and do 1 mama feeding instead per day plus the other 2 bottles for his 3 feeds by mouth. Hopefully he will get a bit better at it and I will get more comfortable with it and we will learn and progress together.

I think that’s about it for us. He needs to remain stable as the last of the Milrinone gets out of his system and tomorrow, we’ll discuss what the next milestone is for us to work towards. We still need prayers for excellent cardiac output, I would love to see less PAC’s, good kidney function, good labs, respiratory stability and an awesome weekend! We have no plans other than eat 3x per day and snuggle. I did bring some tax paperwork back to the hospital with me and hope to find some time to work on taxes a bit while I’m here this time as well as read my book but neither happened today, we’ll see how tomorrow goes.

I was able to catch up with 3 families today… the “boy down the hall” is doing great, His artificial heart is still pumping, he is still sedated and will be for probably a while but he is alive and that alone is a miracle at this point. He has had 5 surgeries in 16 days here. Now, he needs a transplant. Actually, now he needs to rest and regain some strength, he’s been through the ringer the past couple of weeks and needs to heal and get strong again so he can receive a donor heart when one becomes available.

Another gal had a day with good lab results. Her boy is struggling and they can certainly use some prayer for his bleeding to stop. Because of the valve they repaired in his heart, he now is required to be on blood thinners. Because of the complications he has had with a number of procedures, his nasal airway and oral airway are both inflammed and irritated and bleeding. He is on a vent and on ECMO again and his face is packed with dressings to stop the bleeding from all over due to the blood thinners. She is doing well with it all but they need prayers as well.

The gal I’m closest to here is still in the unit, I had expected she would have been released to the floor by now but they are still hanging out up here which she is fine with, she too is afraid to head out to “the floor” and is quite happy staying in intensive care until she feels more comfortable caring for her son as well. He is continuing to improve each day which is awesome as well.

Ok, I need to sleep. THANK YOU for praying for Gideon and our family. Our meal train with extras should be going live soon. There isn’t a ton of stuff on it right now but I will certainly be adding more dates and needs as things arise and we recognize what our needs are. Right now, we are adding some meals and some light housecleaning for it. I’m not sure exactly what that will look like, maybe help folding laundry or washing dishes or vacuuming, I don’t know but there is always something and we are happy to receive help if that’s someones gift/passion/desire. There will be child care needs added to that eventually as well when we have needs for babysitters or child care so we can swap out at the hospital or maybe for Bo and I both to be up here when we do get released to the floor so we can get our directions and guidelines together and move Gideon together. Again, we don’t know what the needs are yet so I will add stuff to the meal/care train as we learn what the needs are so keep an eye out for that and I’ll make it available on the FB group as well.

Seriously all, I can’t thank you enough for your prayers, comments, encouragement and love. I wish I could. I also wish I had the bandwidth to fill out and send thank you cards… people who have donated money via paypal, gifts we’ve received, meals, prayers, notes, just so much. You all have blessed us so generously with so much love, there aren’t enough thank you cards in the world for me to express how touched we are by your love. I do hope to get thank you notes out at least to emails (if they are listed) for the paypal donors so people at least know that we received their donations. I’ll add that to my list of things to hopefully accomplish in the not too distant future. You are so appreciated and loved, thank you.

It all started on Tuesday 1/9. I saw my doctor for my 37 week check up. I had my first internal check of the entire pregnancy in the office and was dilated to a 1 and 30% effaced. I’ll spare you the rest of the girly details but my body (ie: cervix) was showing signs of readiness which the doctor expected since this is my 4th go around. We discussed the possibility of me getting admitted to the hospital at 39 weeks to ensure I didn’t labor too fast and not make it to the hospital if I continued to progress over the next 2 weeks. I had some contractions that night and figured it was because I had been checked that day and the doctor just irritated my cervix. No big deal.

Wednesday 1/10 I had contractions 10 min apart all day long and started spotting. They weren’t painful, just uncomfortable and consistent all day long. We ended up going in to the hospital in the middle of the night to get checked since the contractions didn’t stop and there was a bit of bleeding. When I got checked there, I was dilated to a 2 and 50% effaced. We got discharged Thursday morning to come home. That was sleepless night #1.

Thursday 1/11 I was having more contractions and started bleeding just a bit. Contractions were 10 min apart all day long and still not very strong. I went to drill at the fire station Thursday night and they got a bit stronger as the night continued. After I got home and went to bed, they hit really hard and I labored all night long at 10 minutes apart. Sleepless night #2.

Friday 1/12 was more of the same. Contractions 10 min apart for the whole day. We played poker at the house on Friday night and I continued to time contractions all night but they weren’t that bad yet. Until I went to bed. Again, they hit HARD and I labored all night long with extremely strong contractions all night long. Sleepless night #3.

Saturday 1/13 they eased up when I got up and walked around. Bo and I ran some errands, went out to lunch and had a nice day of timing pretty strong contractions. Saturday night, it hit HARD again. When contractions got to less than 10 min apart (I think it was around 4am?) I told Bo it was time to go in. I had 3 nights of severe contractions already and they were finally getting closer together. Sleepless night #4.

Sunday 1/14 – (around 4am I think?) I notified my friend and photographer who was going to be taking our pictures and told her we were going to go back in to get checked again since the contractions were changing and at about a 9-10 on the pain scale. I told Bo the only way they could get any worse was if they got closer together. They had bounced between 10 min or 20 or 30 min apart the hours leading up to. My friend told me to pick her up on the side of the road, that she was ready to go. I told her no, she could come down later, no need to waste her entire morning when I wasn’t progressing that fast. She persisted and won the battle and we picked her up outside of her house on our way. From the time we got in Bos car, I had a contraction as soon as we got in, I was having another while we arrived at her house (5 minutes away) and yet another when we drove through Starbucks 5 minutes later. I was serious about having a real mocha as soon as I could again. I had text her on the way and said “birth may not be imminent but starbucks certainly is” then placed a mobile order for the 3 of us. :) LOL. I stuck my REAL, full sugar mocha in the cup holder and hung off the ceiling of the car having intense contractions while driving out of the Starbucks drive through. They got to about 4-5 min apart in the car on the way there, it was a very quite ride with just the sound of me groaning and breathing through the contractions. Not much chatter going on anymore.

This is where it gets a bit blurry for me. We arrived at the hospital and I completely lost it. It was just 1 big long contraction that didn’t really ease up anymore. I was trying to give the gal at checkin the info she needed and the gal at triage the info she needed but was trying to breathe and crying so Sara did all that for me while Bo parked the car. They got a nurse from OB down to the ED to escort me up pretty quickly. Delivering at St Joes, you have to enter through the Emergency Department and wait for an escort to bring you up to the 14th floor for Labor & Delivery. When we had been there prior, it took them about 16 minutes to get a nurse down. I think we had a nurse within 5 minutes this time and she took us on a shortcut route through the entire labrynth of the hospital to the elevator to the towers. I, of course, refused the wheelchair  transport and walked (waddled) my way to the elevator having to stop and hang off the wall to make it through contractions that were 1-2 minutes apart a lot. Bo didn’t think we would even make it to the elevator to have this kid. At least we made it to the hospital!

We finally make it up to the 14th floor and get into a triage room. They wanted me to lay down on the bed to get the baby monitor on. Ummmmm, no. Nope. Sorry. No can do. There will be no laying down for me. I wanted to be hunched over leaning on something. Memories get a little more blurry here so I’m not 100% how accurate this all is, this is just how I rememeber it in my head. The nurse finally got the baby monitor on my belly (I’m pretty sure I was still dressed in my own clothes) and instantly there was a problem. A big problem. She was pushing hard on my stomach to try to get a heart rate on Gideon and when she could get one from time to time, it was in the 70’s. I was yelling at her for how bad she was hurting me and she was yelling back at me that she needed to find a heart beat. Not good. Emergency buttons were hit, doctors and nurses poured in by what seemed the dozens and they said we were heading off to have an emergency C section right away. I remember seeing the anesthesiologist in his little blue surgical hat saying he was going to give me a spinal. I didn’t even care. I said do whatever, I was ready to let them cut me open without anesthesia at all just to make the pain stop. When I saw Bos face, I knew it was BAD. The NICU team was in the room, the surgery team was in the room, anesthesia team and the regular labor & delivery team was in the room as well. The triage room, we hadn’t even made it as far as the labor & delivery room yet and they didn’t even have me pulled up in the computer yet to be able to place orders or anything. They flipped the locks on the wheels for the bed and said “lets go!” to rush me down the hall for an emergency C section and I said “I have to push!” They said “oh! lets check you!” and someone promptly shoved a whole arm up inside my you know what and said “There’s no time for a C section, you’re having this baby right now.. PUSH!” So I pushed. Then I remembered to tuck my chin (I forgot to do that with Solomon and had to push much longer with him) and hold my leg and pushed again and out he came. He ws born at 9:41am. With the cord wrapped 3x around his neck. Then I was done. I flopped down on the bed and just tried to breathe. Gideon gave a big cry, I cried for relief because that was what we were most scared of, that he wouldn’t cry and I was just happy to hear him scream. They laid him on my chest for a minute then the doctor reminded me that I needed to deliver the placenta. If you’ve never had a baby, you labor that out just like a baby so you still have to push more to get the placenta out after you get the baby out. I was DONE. All done. There was no more left in me so he pushed on my uterus hard enough to pop it out on it’s own. Then they made me start stripping my own clothes off as I hadn’t had the chance to do that yet.

After that there was quite a blur as well. The NICU team wanted to take him to the NICU because his O2 sats were low but the cardiologists we had met with prior said he would be in the low 80’s until after he has his surgery in 6 months, that’s just normal for him because of the defect in his heart where it’s missing the crux in the center of his heart. All his blood mixes, the oxygenated with the deoxygenated and it all gets pumped out mixed together, that was to be expected, was normal and ok for him. The NICU team said they have hospital policy they had to follow and he met the criteria for being admitted into the NICU so we debated for a while and they got a hold of the cardiologists to see what needed to be done.

A new (to  us) Seattle Childrens cardiologist showed up pretty quickly (within a couple of hours) to do his first Echo. We were still in the triage room with very little space and he did his best but it was crowded and bright and busy in there and he wasn’t getting the images that he wanted, he needed a darker, quieter space and thought he saw some additional things that needed to be checked and recommended that Gideon be taken to the NICU. So off he and Bo went to the NICU while I was supposed to be transferred to a post partum room. It took a while to get me transferred and Bo called me on our way from the floor to say the cardiologist needed to speak with us and I needed to get to the NICU. I hadn’t even checked into the post partum room and got taken to the NICU instead where the cardiologist explained there were some anomalies with his heart that were concerning and of an urgent manner. He said he was going to send the study off to the cardiology team and have a meeting with them that evening and if what he saw was true, we would need to get to Seattle Childrens for emergent surgery for these additional issues he found that hadn’t been seen before.

Around 4pm, we received word that the study was confirmed, Seattle Childrens was sending us an emergency Cardiac Intensive Care Ambulance to transport Gideon to Seattle at 6pm. I hit the nurse call button in my room and told them I had to go. Just 7 hours after delivery while still hooked up to a bag of pitocin which I had been on since delivery to stop the bleeding (I hemorrhaged after Solomon so they were treating me for hemorrhage again). The cardiologist told us he would work with us to try to get me discharged as long as I was ok so I could go to. I have absolutely no idea who delivered Gideon, there were probably 20 people in there but whoever it was deemed it ok for me to be discharged as long as they got another set of vitals and discontinued the pitocin. I signed my discharge papers at 4pm and the ambulance arrived right at 6 to pick us up. The cardiologist and the NICU team both said they had spoken to the transport team who said I would be able to ride with them in the ambulance but when they arrived, they weren’t so keen on letting me go with them. I promised I would be a perfect rider, I would sit down, shut up, wear my seatbelt, and not say a word. They said that’s not what bothers them, it’s post partum moms who pass out in the ambulance during the transport and cause them another big emergency. I told them I would drink water the whole way up and kick back and keep my feet out as much as I could and promised to not pass out so they let me go.

That’s the gist of it. It was fast. And it’s been totally crazy since. One of my biggest fears was being separated from Gideon after he was born in case there was an emergency so I’m so thankful I was able to be discharged with him to go to Childrens. The Saturday before I had him was sleepless night #4 for me, then we had 6 more nights in a row of no sleep with all the alarms sounding from his bed all the time and the staff in and out of his room every 15 minutes at least. He had surgery on Friday 1/19 and by Saturday, sleepless night #11, I started feeling worn down and thought it was best to get out of there before I got booted out of there and get home to get some rest so I didn’t get sick. Oops, I was too late for that one too and did get sick and was stuck at home in isolation for 4 days. We are so blessed my parents had the big boys for over a week and have shared them even with 2 of my friends who offered to help and take some time during the day as well.  Now that it’s been a couple of weeks, Bo and I are rotating shifts at the hospital for a few days each and time at home with the big kids.

That’s it for his birth story! He was 5 lbs 2 ozs, he’s quite a little nugget. 17 some inches long. BLOND hair, very light blond hair, it’s so cute and fuzzy.

I never did get a taste of that mocha we picked up on the way to the hospital…

I just received this picture from Bo:

That is Gideons Milrinone pump. TURNED OFF. Entirely. No more wean. It’s just OFF. They just shut it down and will see how he does for the day. Please pray that he has a STELLAR day of excellent cardiac output, fantastic kidney function and perfect perfusion and oxygenation as the medication wears out of his system. This is a big day….

My reply to Bo was “Wow! I’m terrified!!”

His reply to me….

Well ok then. I’ll keep my focus where it belongs and kick the fear to the curb! Instead, I’ll spend the day praising and thanking God for HEALING GIDEON and the positive progress he is making and I’ll get to head back to the hospital soon and go celebrate with him today.

I’m already having a hard time leaving home. I don’t want to leave my big boys. But I miss Gideon. But then I don’t want to leave Gideon, but I miss my big boys too. It’s a tough, yet awesome place to be in knowing that we can be home for the bigs and at the hospital with Gideon and do our best for all 4 of our kiddos. I might even get to spend a whole hour with Bo today and maybe have lunch together while we swap out at the hospital, that will be the most time we’ve had together in a very long time!

A great day! Lots to celebrate and be thankful for! So why am I still crying? Lol. Post partum hormones, family separated, concern for other heart moms in the unit, thinking about other friends and what’s going on in their lives. So many emotions. So many more hormones. Sugh a good God!