Hospital Buddies

Today was a pretty long day, we have been pretty lucky to have such a little trooper. For having surgery just three days ago he is doing really well. They did end up putting him back on some of his cardiac medicine and he has a feeding tube now, but Bryttney was able to breast feed him for the first time since surgery. We are also able bond with him and hold him whenever we want, he is such a peaceful little guy, and pretty lazy so far. Me and him took a long nap together today.  His voice is slowly starting to come back and he is starting to cry a bit more. I think that is a good sign because it will open that right lung a little more. The nurse practitioner said it is still a bit dark on that side.
Bryttney was having a pretty rough time today, she really misses Zoey. But we don't want to risk getting Michael sick so we are trying to wait it out while Zoey gets better. But it is getting really hard not to run home and squeeze our little girl. She has been such a trooper through this last week, we both feel so guilty not seeing her this whole time. We know she needs her mommy and daddy, but with the progress Michael is making he needs us too.  We are thinking about splitting up and one of us going to stay with Zo, and one of us staying here. The problem with that is then one person is left alone in the hospital with their thoughts wandering about and getting into mischief. Being alone in this type of situation is probably very hard psychologically. I am so glad we have each other to lean on through this. I can't even imagine how hard it is for single parents. The support from all our friends and family is so appreciated, we are so blessed to have such a wonderful community behind us. We are also starting to make friends all over the hospital.

Actually one of my friends from work has been here for 10 weeks and was a huge help to Bryt today. She and her husband have been through a lot the last couple months and she is very helpful to talk to. It is amazing how people open up and are so full of love. You get to talking to them and instantly love them. This hospital is truly amazing, but there are so many people going through such hard things here. After being here for a whole week things slowly stop freaking you out. You hear people's situations which are hard to listen to, but instead of being scared for them, you just care about them and have faith in the doctors here. We all kind of bond together and try to hold each other up.

We got new neighbors yesterday, they are from grand junction and have had a pretty long journey so far. Their baby has had two surgeries already and still needs two more. They have been trying to help us with resources and support groups.  They are both young and have already taken on so much. We were both amazed at how much they know and how calm they are. We are both very glad we met them, they helped calm us down and we had a much better night after chatting with them.  I also got to nerd out for a few hours and give some Photoshop lessons. Score!

Breaking up the Crud?

Aw! Worst treatment ever! They are 'breaking up the secretions in his chest'... They are using this cuppy thing to pat him all over his chest and back. Michael hates it and its sending off all kinds of alarms. Supposedly it is good for them and some kids like it. Agh! I'm freaking out and can't help but watch, I want to go punch this guy! Bryt keeps telling me not to watch, but he just keeps patting him all over, I cant help but think about his little chest and how sore it is... and... it's over now... it only lasted like 30 seconds.. but It was hard to watch and was like the longest 30 seconds ever. There have been so many 'nails on a chalkboard' moments here. Half the stuff you see or hear is just hard to take in. Michael is sleeping peacefully now, but that was a rough minute we just had together. They took away a few more of his medicine pumps, his little area looks awesome now! Only one pump left and all it is doing is pushing through some fluid to keep the line open. It doesn't even have any medicine in it!

Post Op - Day 3

Michael has been cruising along with his recovery, he has been so blessed and so strong. He is back on  a feeding tube today, he is just not eating enough. I think he is supposed to be drinking like 90ml per feeding and he is only taking about 20ml. He also seems to just be a bit lazy when it comes to feeding, he just expects it to go down his throat by itself.  We haven't tried breast feeding yet because his respiration is still a bit fast. The doctor said he is probably breathing fast because his throat is soar from the breathing tubes. She also said one of the reasons he might not be eating is because of the arch they repaired. Before the repair, the blood going to all the organs was restricted by a kink in the arch. So now that it's fixed the belly is getting more blood and needs to get used to it. This video is actually of him 'eating' the night before surgery. So you can see he wasn't really into it then either.

His respiration is fluctuating quite a bit and freaking us both out a little, his alarms are starting to ding again... man I hate alarms. I am happy to have the surgery part over with, but now we have to see how he reacts to each thing they take him off. This morning he was taken off his brain and kidney tissue monitors, and he was also taken off the last of his cardiac medicines. That could be causing the faster respiration, but we kind of just have to see how he stabilizes.
It's kind of crazy how all this works, I like to think of the surgeons as mechanics, and the heart as their engine. Things are supposed to pump and flow a certain way and they just try to make it work like it was originally designed by our almighty engineer. But then there is this whole other element, of the individual growth and unique structure.  I just want some definite answers, but it does not like work like that. The answer to every question is "We'll just have to see how he does.." We understand they don't know how he will grow, but it is hard to always be in that waiting stage.
We just got through sitting in on his rounds for this morning, He does still have a slight heart murmur,but the doctors say that we shouldn't worry about that until he is bigger. They said he will most likely need another surgery in the future, but they will have to wait and see how he grows. We are really hoping it will just correct itself as he grows. He is off all of his cardiac medicine, but after rounds and talking to the cardiologist they are probably going to put him back on some if it after his echo today.  They are also concerned about his vocal cords and the fact that he is not eating as much as he should. He is probably going to be examined by an ENT later to see if he has some vocal cord damage, I guess that is the main thing that could be affecting his swallowing. We get to go over his post-op echo today or tomorrow and hopefully get a little more info about the future.
This is getting easier to deal with as the days go by, but when you have to backtrack even a little bit, it gets a little freaky again, and then there are these stinkin alarms!

CICU Neighbors

Michael is doing good, we can hold him whenever we want now, and he is pretty stable.  We have a couple new neighbors in here though. They are in the same situation were in a couple days ago, one of the babies is a bit older and they have to keep giving him shots. You can tell this place freaks him out and he does not like getting poked.  There is also an older couple here with a brand new daughter, she has issues similar to Michael's and she had her surgery this morning. Her parents were able to see her for the first time around 9pm.  I tried to warn her father about the 'accessories' but I don't know if you can really prepare anyone to see their brand new child like that. Just walking past her little room, I started crying again. It's so hard to look at a sweet little soul going through so much right when they come into this life.
I appreciate every one of you following my families journey through this. I would like to ask you to please pray for this sweet little girl tonight, she still has all her doctors around her, including one of the surgeons. I can't imagine the fear her parents are experiencing now. This is a hard place to stay, even though Michael is doing great. It's so hard to see other families going through this. Please keep your hearts open for this  little girl and her parents. I don't know any of their names and have only talked to them twice, but I know they can use all the extra strength they can get right now.

Finally waking up

Michael has been hitting all his goals today! They took him off the high-flow, took him off his blood pressure medicine, and took out one of his lines. They also re-arranged his little area so it does not look nearly as scary as it did before. We are able to hold him and feed him now. They let me hold him for the first time since he was born, it was awesome! He is such peaceful little guy. He just sits there and koos like a little puppy.  He  started opening his eyes about 30 minutes ago, he was looking all around and very calm. He is so awesome! Bryttney is just loving him, she needed this moment. He is doing great and the nurses said he is exceeding all expectations.  Part of his right lung is a little collapsed but they said that is pretty normal for this type of procedure. They have him propped up so that side is a bit higher.  We will probably be moving him out of intensive care tomorrow or weds. Will keep updating as he continues to progress.  Thank you so much for all of your support.

My World Divided

Today was planned for Zoey. We'd planned a day at the Butterfly Pavilion and a normal night at home in bed with our little girl. Last night we received a call from Grandma that Zoey had started running a fever of 102. Up until now I've felt pretty put together.  A little guilt was already in the back of my mind because I've been at Children's more than at home. My gut reaction was to run home and hold my little girl to help her rest with her Mommy. The next moment I was stopped. What if it's something contagious? Would I be able to risk going home to Zoey with the possibility of not being able to come back to Michael? Now my world is torn. I have to chose which of my children to take care of? Really? Zoey is old enough to know if I'm there or not, and Michael is recovering (fast) but needs to learn how to eat and I'm finally going to be able to hold and feed him this week. My breakdown, My children. I need both of them and both of them need me right now. Where am I supposed to be? Jaron began to pray for me as I was unable to through the sobs. Shortly after we were both able to fall asleep and it was probably the best sleep we've had since we arrived at Children's. We called Grandma this morning to check in and decided it was best to have her take Zoey into urgent care to have her scanned for and bronchitis or pneumonia. Until we hear back to see how our little girl is doing we've decided to stay here with Michael.

Milestones have been made today. We arrived at his bedside to see that only the picc line remained in his left arm for minor medication and a small amount of O2 through his nose. They removed the bandage from his incision so all that's left is the glue holding it together that will chip away as it heals. He had his first bowel movement which surprised the nurses. She said he was healing like a champ! He began to eat again last night but they'd like to see him taking in a little more before I begin to breast feed - Tonight.  They wanted me to hold him which made me nervous. What if I bend him wrong? What if he's uncomfortable? The nurses decided it was best so we moved a chair right up next to his bed so the cords could reach.
As I held him he coo'd. It was a scratchy sound but it meant comfort. This was my first moment to really "see" my son. Check his fingers - check his toes - see how fragile his little hands were but at the same time feel the strong grip he had. I felt his ears and caressed his nose and rubbed the peach fuzz on his head for luck.

His eyes were trying to open and his mouth was searching for food. We warmed the bottle to feed him and once he got it he began to chug it down. He drank it so fast the he started to choke on it. I freaked out and started turning for a nurse at the same time trying to pat his back without bending him or moving him. He quickly recovered and started looking around the room. This only lasted a moment before he was back asleep. He'd had enough and was comfortable again. The OT's (Occupational Therapists) came down that same moment. They see how his coordination is doing after surgery and to make sure his throat is healing after the breathing tube. They also wanted me to burp him. This was a no no in my mind. No way am I going to sit him up to burp him, or lay his chest to my shoulder. They helped sit him up and he started to fuss so they started moving him to my shoulder. I patted his back a couple times and he began to cry. I told them I was done and I wanted to lay him back down. They were happy with the progress he's made and gave me the ok to breast feed later on in the day. This also means I'll be working on his latching and coordination throughout the night. The night I intended to spend with my beautiful daughter.

I can't wait to see my little girl. I need her to be ok and to be strong for mommy. This little girl doesn't get her mommy to take care of her tonight as she heals from whatever is ailing her. Her mommy also doesn't get to hold the little girl she's been missing for over a week. I am so thankful for our family and how supportive they've been. I look forward to a reassuring phone call from Grandma saying she's ok. I can't wait for my family to be together at home, in one place at the same time. God bless us and the families around us here in the CICU.

The Day After Surgery

 

 This morning was good, he had half his tubes out and was starting to come out of sedation. I was still having a pretty hard time with it because he still had the ventilator and a tube going from his nose to his belly draining all the bile. I couldn't help but think about how painful that thing down his throat must be. I was so happy when it finally came out. He looks amazing! He is off the ventilator and all he has plugged into him are a few blood pressure medicines, some oxygen and a line in each arm.  He also has two sensors measuring tissue damage, one on his head, measuring the brain tissue, and one on his kidney.

Since they had to actually look into part of his heart, they had to stop it for part of the surgery. All of his blood went through the bypass machine, was cleaned, got rid of the waste, then the oxygenated blood was brought back to his body. Since the blood was going through tubes and a machine, when it gets back to the body it causes a bit of inflammation and can cause some tissue damage to some organs, one being the kidney. We are helping test one of the sensors in hopes of helping the doctors find a way to prevent kidney injury. Michael is already doing his part to make the world a better place.

After the long day yesterday, and then him still having the ventilator in this morning, we both wanted to get out of here for a while. Zoey came to the hospital to visit, but she is too young to come see her little brother. We walked around the hospital and looked all the cool things they have here. Even though the situation is not the best, this hospital is really awesome. There are a lot of things to look at and plenty of hallways to explore. 

After we walked around with Zoey and her grandparents for a little bit, Bryttney decided she was going to go home with them and celebrate easter. I was still a bit depressed and having a hard time with the surgery and all the tubes. But after spending a few hours with Zoey and Bryttney's parents I thought it would be good for me to get out and see my family.  It is hard to leave your little one in this kind of condition, the guilt is rough. But we also feel horrible leaving Zoey for so long, we have only seen her once in the last week. So we headed back home for the day. It was awesome visiting with family and getting back into normal conversation. We have the best family! Zoey was running around with her cousins and we played with bubbles at the park, we wrestled, we got to do an easter egg hunt, she got to help mommy do her hair. It was a really good day, it made coming back to the hospital exciting and easy. We were both so excited to see our little champion. 

We got to his bed and he was crying while the nurse was changing his diaper, his little throat sounds a little sore from the tubes he had in earlier. The nurse assured us that crying was a really good sign and was very good for the lungs after surgery. She said they want them to cry a little bit and have him on some medicine to help with the inflammation in his throat. He kept fussing after the diaper change was over so they tried to feed him a bit. He took the bottle and was able to eat on his own. That was a really good sign, he is moving a long at a really good pace. He looks really good, we should be weening him off some of his oxygen through out the night. He is such a little champion, he has been progressing all night and all day. He is so strong already, I can't wait to see what kind of personality he has. He is awesome! I hope everyone knows just how awesome these little guys are, they are so strong!