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. 

Off the ventilator

Colston has been off the ventilator since about 4 this afternoon. The doctors and nurses are all surprised and impressed at how well he is doing which in turn makes us very happy parents.

He has been sleeping ever since they pulled the tube out. The nurse said usually babies are crying and fighting by now but Colston is just content. I want him to wake up because I miss his smile and his big brown eyes like crazy but on the flip side, the longer he is sleeping without the ventilator, the better he can heal without us having to strap him down. 

He has also been able to be taken off of four different medications. Yay! 

Like I was saying in one of my earlier posts, this go around is so much harder than last time. I feel like a part of me is missing. I just want him to open his big eyes and laugh and do all his silly faces. 

We will get there. 

Good Morning

Colston is doing great this morning. Actually, almost a little too great if you can imagine that. 

He is fighting the ventilator and breathing on his own which is good but his blood pressure numbers and some other numbers aren't quite where they should be for them to take the breathing tube out. They had to sedate him to keep him from moving so much until his numbers match. 

When I woke up at 3 this morning the nurse had put socks on his hands and clipped them to the side and she literally said, "yeah he was trying to take the breathing tube out on his own."

That's my stubborn boy. 

A woman in one of my mommy groups had started a discussion asking us who our role models and inspirations are. I think you know who mine is.

Mr. Colston James Krische.

You, little boy, are the most inspiring person and I thank God everyday that he blessed me to be your mommy. 

You have taught me just how precious and short life is. You have taught me to love deeper than I ever thought I could and you have brought your daddy and I closer than ever. 

You have taught me that even though our situation is difficult, it doesn't invalidate the struggles that others go through even if they seem minor in comparison. 

Most importantly, you and all these other babies we see in the hospital right now, have taught me to be a more compassionate human being. You have taught me that everyone has their own set of struggles and that there will always be people that have it better than us and there will always be people that have it worse than us. We need to be thankful and happy with where WE are right now because this is exactly where God needs us to be right now. 

I can breath now

This morning I handed my sweet baby boy over like this,

He was doing so good. We were set to go back around 8 but like I said earlier, anesthesia was running late so this poor guy was so mad and cranky when he finally went back around 930. They made the first incision at 9:50 am and we finally got to see him at 9 pm. 

Now my sweet boy is all hooked up and plugged in to everything. 

They ended up not putting Colston back on bypass like my last post said. Dr. Ciccolo decided against it because he didn't want to put more stress on Colston's kidneys. They were able to patch up the left pulmonary artery. What this was doing was causing too much pressure in Colston's lungs. 

He is being closely monitored over the next few days to make sure that the eight hours today that he was on bypass did not affect his kidneys or anything else. So far, everything is looking great though. 

The numbers that they are looking for to determine if the lungs still have too much blood pressure are on the high side of normal range. If those numbers go up then Colston will have to go back to the cath lab to get another stent put in. 

That's all to update for now. Justin went back to the Ronald McDonald house and I am here with monster man. 

p.s. The bottom picture of Colston and future pictures of Colston with any wires attached will always have a water mark on them. 

New heart parents I encourage you to do this with pictures of your babies in the hospital too. There are so many horrible people out there that use pictures of babies in distress like this to make fake GoFund Me pages. It is absolutely appalling. 

Delay

One of the doctors just came out and gave us an update.

The surgery was all done but when they took the follow up picture they saw that the left pulmonary artery was really narrow from the band. 

Now Colston is back on the bypass machine and back in surgery for another few hours so they can patch that up. 

It's hard to hear but we are thankful they saw this now and not later where he would have had to be opened back up again. 

Half way there

Colston's nurse just came out to update us. 

They are almost done with repairs but we still have about 2 hours to see if they can get him to stop bleeding and if they can, they will close his chest.

If they can't get the bleeding to stop he will go up to his room in the PICU with his chest still open with a drainage tube. 

Cross your fingers they get the bleeding to stop! 

I just laid Colston in the nurses arms. 

The anesthesiologist was running about an hour late so he had to wait even longer being starving. Poor guy hasn't been able to eat since midnight. He was crying when I laid him in the nurses arms.

Hardest thing I have ever had to do was walk away from him as he was crying and looking at me and Justin. 

It's going to be the longest six hours of my life. 

Bidirectional Glenn

We are a day away from surgery. Today is a very lazy day of lots of snuggles and just hanging out at the Ronald McDonald house. Here's Colston this morning being a bed hog. 

Surgery is at 9 am tomorrow morning. 

We met with his surgeon, Dr. Ciccolo, on Monday to go over the surgery in great detail. I had my notepad with me to write everything down but it was so much information that it was impossible for me to keep up and I know how valuable his time is so I didn't want to keep him longer than needed. Here is the Mayo Clinic's definition of what will be happening tomorrow. 

Bi-directional Glenn procedure. This procedure is generally performed when your child is between 3 and 6 months of age, after the first procedure. In this procedure, doctors remove the first shunt attached to the pulmonary arteries, and then connect one of the large veins that normally returns blood to the heart (the superior vena cava) to the pulmonary artery instead. If surgeons previously performed a hybrid procedure, they'll conduct additional steps during this procedure.

This procedure reduces the work of the right ventricle by allowing it to pump blood mainly to the aorta. It also allows most of the oxygen-poor blood returning from the body to flow directly into the lungs without a pump.

After this procedure, all the blood returning from the upper body is sent to the lungs, so blood with more oxygen is pumped to the aorta to supply organs and tissues throughout the body.

Dr. Ciccolo informed us that it will take approximately 6 hours and requires Colston to be put on the bypass machine. 

That of course is not easy for any parent to hear but we know that we don't have a choice and all of this is going to give Colston a chance at a better quality of life.

That being said, the mortality rate is approximately 15%. We are so thankful that technology is so advanced with this heart defect and that there is an 85% chance our baby will make it through but it is never easy to hear the probabilities of your child surviving an operation. 

Colston is expected to be in the hospital for about 2-3 weeks but then again, it all depends on him. If he is able to get off the ventilator quickly and eat how he was before surgery then we can go home. They have had babies go home in a week and they have had babies not go home for months. 

It's times like this that truly test your faith. I will be the first person to admit that my faith wavered during Colston's first operation and his two cardiac arrests that followed. It wasn't fair for my sweet innocent newborn baby to have to go through all of this. 

The best words of wisdom I received were, "It is not God that is letting these bad things happen. He simply knows that bad things happen and He gives you the strength to get through it." Ever since I heard that, I have given this whole journey to God. It is in His hands and only He can help us through it. 

This morning Justin and I were looking back on the pictures we took in the first two days of Colston's life before he went in for the Hybrid at two days old. It was hard to imagine past that moment. We didn't know if he would make it this far. Now here we are going in for stage two and having the exact same fears and worries, but it is also different in many ways. 

We actually know Colston now.  

I know that might sound weird to hear and I don't know any other way to put it but we didn't really know Colston then. Of course, he was our son and we loved him with all of our hearts but we didn't have the bond that we do now. 

I missed out on crucial bonding time the first day of Colston's life because I was sick in my room and they wouldn't let me go to the NICU. I didn't get to see him until he was about 12 hours old and even then I had to make it quick because it was about 10 at night. I didn't get to hold him until he was a week old. 

Things like this are gut-wrenching for a new mother and father and it's even more so now that we know what makes him smile, we know what makes him laugh, and we know his personality. 

We are truly a family and have been able to actually be a family once Colston was able to come home at 4 1/2 weeks old. 

We know Colston is one tough kiddo. He is way stronger than I will ever be and I draw strength to get through this from him, Justin, and God. 

Please keep Colston in your prayers during surgery tomorrow and his recovery in the following weeks.