What happened?

Where the heck did March and April go?

I absolutely cannot believe we are already halfway through May. I am already planning Colston's first birthday party! 

Just this time last year we were getting back from our experimental surgery at UCSF. 

There really hasn't been too much to update which is nice. We have been loving being a "normal" family. 

On April 15 Colston had a lung profusion scan done to check the blood going to each lung. Our cardiologist said that in a perfectly normal heart, 45% of blood flow goes to the left and 55% goes to the right. Colston, even being a single ventricle heart has 42% going to the left and 58% going to the right! He said that is absolutely amazing for a heart baby and he could not be happier.

We of course were so relieved because 1, he was doing great and 2, that meant we didn't have to go back to Las Vegas to have a stent placed in his left pulmonary artery. 

So now we just have check ups every 6 weeks and hopefully nothing else is needed until the Fontan in the summer of 2017. 

We used to see the cardiologist once a week, now we go 6 weeks in between appointments! I am so thankful Colston is healthy enough to be able to do that but it is the in between time that scares me. As we all know with heart babies, anything can happen in an instant. 

I think my updates will be a little spaced out from here on out. We are so thankful that people want to check on Colston and see how he is doing but sometimes there is just nothing to update and honestly, it's nice. I don't want to have to update bad things that happen so let's just hope that we only have good things to update from here on out. 

<3

Doing great

All is going great over here at the Krische house!

Colston had his second check up at the cardiologist since being home and the doctor is very impressed. Colston's oxygen sats are in the high 90's which is phenomenal and his heart function looks great. 

We are not doing another heart cath in a couple weeks because Colston is looking so good. Instead, we will see the cardiologist every few weeks to check on things and sometime around May we will do another lung profusion scan to check how much blood is being pumped into each lung. Luckily, this can be done in Reno and we don't have to make an 8 hour trip to Las Vegas for a 20 minute scan. 

Colston has started solid foods. So far, he likes sweet potatoes the best and green beans the least. 

His bottom front two teeth are poking through which is making for a fun teething period. Colston doesn't sleep through the night like he used to and he now bed shares with us because he eats like every 2 hours in the middle of the night. 

It's okay though, it's worth it. 

I will say this though, I don't know how something so small can take up so much room in a bed. 

:)

Home

It's been an amazing week being back home. I'm sorry I didn't update with an actual "we're home!" post. 

We got home last Monday and Justin took the rest of the week off of work so we were just enjoying being back home as a family. Justin went back to work yesterday so Colston and I are easing back into our routine. 

There was a little bit of talk before we left about doing another heart cath in about a month to check on the left pulmonary artery that is narrow. We are just waiting on the word for that. 

In the mean time, we are back to regular cardiology appointments every 2 weeks and Dr. Ludwick is even talking about how they will soon be spaced out to every 3-4 months.

I don't know if I'm ready for that. I love that they deem my son healthy enough to go that long in between visits but it scares me that something is going to get missed in between. At the end of the day, I know they are the professionals and they know what is best and that everything is ultimately up to God. 

To my husband on Valentine's Day.

Justin, 

This is our first Valentine's Day as a married couple and we are spending it in the hospital with our son recovering from his second open heart surgery. 

This kind of stress is the kind that can easily break a marriage. I'm so blessed to be able to say that it hasn't fazed ours in the slightest and it's because God has given me such a special man as a soul mate. You are the reason I am able to get through all of this. Your love and support has literally been a life line for me. 

Thank you. 

Thank you for loving me when I haven't had my coffee.

Thank you for loving me when I'm stressed. 

Thank you for loving me without condition.

Thank you for loving me when I don't love myself. 

Thank you for just loving me.



I love you!

Another rough night

Yesterday has been the worst one yet of our recovery period. 

Colston's feeding is still really up and down. He had eaten about 3 ounces at 11 yesterday morning and threw it up about 30 minutes later (right into his poopy diaper that I was changing). We tried to feed him about every hour since then and he just refuses to take the bottle and gags when the milk touches his tongue. They ended up putting him back on IV fluids so he doesn't dehydrate. 

He was exceptionally cranky all day but Justin and I were still able to calm him down and play with him and keep him content for a while. We didn't think he was in pain because the few times that he has been in pain, after vaccines and having a fever, he is inconsolable and won't let you put him down. He was just fussy and I think that the hospital environment where you can't go more than an hour without someone waking you up, poking you or taking your temperature or what have you will make anyone overstimulated and cranky. 

 Going into last night though is when things started to take a turn. 

Around 7 is when Colston started to get even more upset and we couldn't get him to stop crying. That was when we knew something was hurting him. This was hard because the nurses were in shift change and we didn't know who our night nurse was. About 7:40 our night nurse came in and it just happened to be the nurse we had the night before (who would ask to give Colston morphine every time he made so much as a peep.) She asked again, if we wanted to give morphine and I said no. 

You see, I am not anti-morphine or anti-modern medicine. I don't only believe in natural alternatives. Morphine was making Colston sick and the surgeon himself confirmed it. We could have given him Ativan but it is harder to wean babies off of and we didn't want him to have more severe withdrawals.

Justin and I were really in a tough spot. We are trying to get him to eat and the medicine they were offering is medicine that makes him so nauseous he throws up and wont eat for hours and hours. How are we supposed to work on his feeding if he is sick? Of course Justin and I want to do what is best for Colston and we truly felt like if we gave him morphine, we would be taking steps backwards. 

The night doctor finally came in and said he can give Colston tylenol with codeine. I immediately said yes. I asked if we can give Colston a feeding tube so that he is getting nutrition. He said yes and that it is a good idea because he didn't want to give him the tylenol with codeine on an empty stomach. 

I thought, great! Now we have a plan and can move forward.

A couple minutes later the nurse puts the feeding tube in and Colston cried but stopped not long after. The nurse said that she needed to call x-ray up to take a picture to make sure the tube is in the right spot. Okay. 

X-ray shows up about 40 minutes later. Colston has been crying this whole time. Justin and I took turns rocking Colston, having him play with his rattles, and trying everything to make him stop crying. He cried even harder when they took the x-ray and the nurse asked again if she can give morphine. I said no, that would defeat the whole purpose of the last hour and that we will just see the x-ray now that it's done, thinking it would be very soon. 

Almost an hour later and the x-ray is still not here. Colston is screaming uncontrollably at this point. Justin and I were ready to give into the morphine. The doctor came in and asked if he wanted us to give him something to calm down. YES! I practically yelled at him. 

The doctor gave Colston a tiny bit of versed and Colston went from screaming to smiling in about 3 seconds. 

They apologized for it getting to such extremes. I told them if I would have known it was going to take almost 2 hours to get Tylenol then I might have reconsidered the morphine. All the doctor could say was "sorry, I should have been more specific."

As I write this this morning, I had to leave and tend to Colston because we got the go ahead to start feeding him. He ate two ounces and it still acting like he is hungry but we need to keep him upright and make sure he doesn't throw up. We are stopping at two ounces and Dr. Ciccolo (the surgeon) wants us to "play hard to get" and make Colston want to be hungry and want to eat. He just got another dose of tylenol with codeine and should be asleep soon so hopefully when he wakes up he will want to eat again. 

Seeing Colson eat just now and want more make me feel so much better about our decision to not give morphine. He would still be sick and we would be ten steps back. 

I understand a nurses first priority is patient comfort but to be honest, I don't understand why morphine is the first go to. To me, it seems an extreme first choice for an infant. 

In other news, Colston will be having a lung profusion scan tomorrow to see how much blood is being pumped into each lung since they saw the narrowing in the left pulmonary atery. This will tell us if we need to do another heart cath before we leave and place a stent. 

I am praying for a good result from that scan because Dr. Ciccolo said we will probably be set back a lot if he has to go back under anesthesia. 

Sorry about this post getting so long. I'm half updating-half venting. 

Hope everyone has a great day and thanks for checking on Colston :)

Colston was doing great up until last night. 

I had fed him about three ounces and he started throwing up again. Poor guy had it come out his nose and everything. 

The nurse think that he ate too fast. He hasn't wanted to eat since and they have put him on IV fluids so he doesn't dehydrate. 

He was supposed to get his chest tube out this morning and after some consultation with the doctors, they are taking it out around 4:30 tonight. 

After that, all we have left is to master feeding again.

They are putting a feeding tube in so that whatever he doesn't take by bottle will be put through that. This is our last step before we can go home.

It is so amazing to me comparing last time to this time. Last time, four days post surgery he was back on the ventilator for the second time. Now, we're talking about going home. 

It really helps keep things in perspective. Even though it is frustrating that Colston won't take a bottle right now, we are still miles and miles ahead of the game. The doctors are highly impressed with how well he is doing. His oxygen saturation levels are in the 90's which is phenomenal, his blood pressure is great, and he is off all medications except the lasix and aspirin which he has been on since the first surgery. 

Still slowly just chugging along :)

Steady going

Colston has been doing great since yesterday. He has been eating a ton and has all the doctors impressed.

We did have a little hiccup this morning. He was extra fussy and ended up throwing up all over himself. We got him all cleaned up and he was still crying.

They suspect that he is having withdrawals from the pain medication and wanted to give him morphine to calm him down. 

I really wanted to see if I could get him to calm down on my own so I got to hold him today for the first time in 3 days. It was amazing but he did cry the whole time. I was heartbroken that I couldn't get him to stop crying so I gave the go ahead to give him morphine. He was asleep in minutes. 

It's been a pretty quiet day since. He has been sleeping most of the day. He woke up and played with his rattles for a little bit and then fell asleep like this...

a toy in each hand. 

Dr. Ciccolo came in this morning to check on him and thinks the chest tube can come out tomorrow. YAY! 

Colston has gone down from 9 medications to 3 and got his neck IV and arterial line out. 

I love seeing them take things away. It just means we are that much closer to going home.