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:
https://www.facebook.com/groups/158210648110517/

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!
Love,
Kari