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 email@example.com