One week home

Today marks a week that we got out of the hospital and almost a whole week being home.

 We had been down there for 50 long days. 

Being away from home for so long makes you realize how much you take for granted. You truly learn to appreciate the smallest things. For instance, we took Colston for his first walk in the stroller the other night.  You can't do that in Vegas. Not only because it is scorching hot all the time, but you also are in constant fear that you're going to get mugged...or worse. 

As we are walking a couple streets over from our house, we see this guy. 

Now you definitely don't get that in Vegas. There were about three more laying next to him. I told Justin it was too bad I didn't have my bow with me. ;)

Colston is doing great at home and we are loving that he is already on such a great routine from the hospital. He eats every three hours and he will let you know if you have passed that three hour mark. He sleeps most of the time too. He is loving not being bugged by doctors and nurses every couple minutes. 

We had our first cardiology appointment yesterday and the doctor is very happy with how Colston is doing. His oxygen saturation in Vegas was always high 90's, which is over saturating, up here at the higher elevation he falls into the normal range and is satting around 85. His echo looked great and the stent and bands are looking perfect. He is only on two medications and he takes them like a champ. He puts his lips around the syringe like it's a bottle. 

Our goal right now is to continue to gain weight. He is finally back at his birth weight of 5 pounds 5 ounces. Ideally they want him to gain an ounce a day but we ultimately will take any weight gain we can get right now.  

So for right now, we are just getting settled in at home as a family. 

And I mean, I think Colston is settling in just fine don't you?

He looks a lot more comfortable than he did in the hospital.

He also got his first bath. He was not a happy camper but I loved snuggling him in his towel after. 

And then after bath time, we get in some comfy pj's and fall asleep in either mine or Justin's arms. He is starting to smile too, but it's still like lip twitches. I had to snap the camera a couple times in order to get a good one. 

He is the sweetest little boy already. He loves being held and I am more than happy to oblige.  It's safe to say I haven't even unpacked yet because all I do is hold him. 

We're free!

Colston got to leave the hospital yesterday!

We are so ecstatic and still cant believe it. 

We are back at the  Ronald McDonald house for the weekend to make sure Colston does okay outside of the hospital environment before we drive 500 miles home.  Colston has a cardiology appointment Monday morning and hopefully we will get the all clear to go home!

Tell me he is not totally comfortable outside the hospital.

Our first night last night was great. We actually feel like a family now.  We can pick Colston up whenever we want, we don't have to worry about pulling leads off or tugging on his IV. 

He truly feels like ours now. 

We could not be more thankful to the nurses and doctors we had.  Everyone took such great care of us but we want to say a special thank you to Stephanie and Susan. 

Stephanie-

I don't know if you will ever read this but you were Heaven sent. You took such great care of Colston and I loved how you would actually talk to him and interact with him. 

I will never forget that you were the one who let me hold my son for the first time. 

Susan- 

You always made time to come see us at least once a day. We saw how busy you were and you always at least peeped your head in to say hi. You always asked how we were doing and if there was anything we felt needed to be voiced. You helped us when other nurses were busy even though you were getting ready to go home and never made us feel like our concerns were invalid. 

Justin and I truly consider you guys apart of our family and we can't wait to see you guys when we come down in 5 months for Colston's next surgery.

My kid is a junkie

Poor Colston.

After having to go back on the ventilator four different times and being pumped full of medicines, he is now having withdraws. He is very agitated most of the day and not much comforts him except for being held. Lucky us ;)

The PICU found us a rocking chair so we now spend most of the day rocking back and forth until he falls asleep. 

The doctors are watching his agitation and if it increases, they will have to give him Ativan to calm him and help keep his heart rate down, which sounds counter productive but they would start by giving him that and then slowly weaning him off. We are trying to avoid that route and quit cold turkey by keeping him calm natural ways like rocking him and holding him, and it seems to be working.

We are once again so close to going home. Our biggest hurdle is eating. The goal is for him to drink 50mL from the bottle. Right now he drinks about 30 and then gets tired and they end up putting the rest through his feeding tube. As soon as he can take the whole bottle for a consistent 24 hours, we will be on our way home! 

Back to "normal"

We are back to normal over here. Our version of normal that is.

Colston is doing great. His oxygen sats are high 90's, sometimes 100, which has the doctors and the nurses amazed. Usually heart babies don't sat that high. 

They are starting him back slowly on breast milk today. He's been getting nutrients through his IV and was given Pedialyte through his NG tube yesterday. Poor guy hasn't actually eaten since 1:30 am Monday and it is now Saturday. They want to start him out slow because he has had blood in his last couple stools. It could be from the aspirin but it could also be a number of things. They aren't terribly concerned with it which makes us feel better. One good thing about him not eating this week (hey, I had to find a silver lining somewhere) is that I have a good stash of breast milk stored up in the freezer at the hospital. 

Pumping has been a big love/hate relationship for me. On one hand I love that I am blessed to be able to produce milk because I feel like it's truly the only thing I can do for Colston. On the other hand, it is really testing my patience. It is proving to be really hard to stay on a strict pumping schedule when you are constantly exhausted. I started out pumping every three hours but as more and more things happen throughout the day, I find myself going 4 sometimes 5 hours in between pumps. Don't even get me started on pumping in the middle of the night. Justin and I usually dont get back from the hospital til about 10 pm so I will do one pump before bed, set my alarm for a 1 a.m. pump and then end up sleeping right through it.

As scary as the last week was, we are back on track to hopefully going home soon. To be honest, it scares me a little. I've become accustomed to hitting the nurse button every time I think something is wrong. I'm used to looking at a monitor to know if he is getting enough oxygen and to see how many breaths he is taking. It makes me nervous to go home without any sort of monitor and to be seven hours away from his doctors. If something were to happen at home, Colston would have to be care flighted down to Vegas. 

It's one of those things where you just have to trust that you will know the signs of what to look for and that God is right there with you. He was definitely right there with Colston going into cardiac arrest twice and He was right there with us afterwards. 

The emotional highs and lows of having a heart baby are very draining. We went from being a day away from going home to being told our son had to be revived. Throughout this whole journey, we have been told to expect the unexpected. But nothing prepares you for that. 

We are just so incredibly thankful to the Lord above that we are back on a high and we pray that it stays that way.

Colston is officially back off the ventilator!

He is much happier to have that out.

They drained 10 cc of blood around his heart yesterday and ever since his heart rate has been much better and he hasnt been having the desaturating episodes.

They are going slow on feeding him and in fact, havent even started yet. He has has blood in his last couple stools and they want to make sure it is just from the aspirin and not from an intestinal infection before they feed him.

He will start back at 2 cc/hr through his feeding tube and work back up to the bottle.

Colston had another echo this morning to check the fluid around his heart. It has built up a little bit more.

The doctors say it is right on the border of going in and draining the fluid and waiting to see if it absorbs on its own but because he is having episodes of bradychardia and desaturating, they want to play it safe and get the fluid out now.

They are doing this by opening a small window in his previous incision and draining it that way versus a small needle where he wouldnt have to be opened back up at all. They dont have a good access point doing it the "less invasive" way.

Luckily (if you want to call it luck) he is already intubated and has the central line in his neck so that takes time away from how long he will be in the OR.

Justin and I are so scared because it seems like everytime they say "the risk with this is very low", something happens.

But, it needs to be done so we are putting all of our faith and trust in the doctors hands.

Twice

I am eating my words from my last post guys...

We had another scare today.

We were just a couple days away from going home. We had a small check list of things to complete before we got our final discharge. One of those things was taking the RA line out of his stomach. Just like the heart cath last week, this was supposed to be a straight forward easy procedure. It was done right in his room and should have taken five minutes tops.

But then ten minutes went by. And then twenty.

A nurse came into the parents lounge where we were waiting and asked us to step into the hallway because "something happened".

Colston went into cardiac arrest again. He was brought back after a couple minutes of compressions. 

He is back on the ventilator and now has fluid around his heart that they are monitoring very closely to see if they need to drain it.

He also has an IV in his neck now.

The doctors arent sure what caused this. They suspect his pain was making his heart rate go up too high and before they could get him pain meds he became unresponsive.

Its so hard seeing him hooked back up to everything after just having held him and rocked him this morning. Who knows when we will be able to hold him again and who knows how far back this has set us. Hopefully once the tube is pulled Colston will be able to pick up feeding quickly again.

My concern was neurological damage from having gone into cardiac arrest twice in a week (did I mention we REALLY hate mondays now?)  The doctor reassured me there shouldnt be any brain damage because compressions were started immediately in both instances which means he never lost oxygen to the brain.

Colston is grounded until he is 18 and out of the house for everything he is putting us through.

Sorry it's been a few days since we have updated. It's been pretty quiet over here so there hasn't been a whole lot to update.

 The last few days have just been working on Colston being able drink a whole bottle and gain weight. His weight has actually gone down in the last two days and the doctors discovered it was because of the Lasix medication he is on. The nurses were giving it to him three times a day when it should have been dropped to twice a day, so it was making him go to the bathroom more thus losing weight. 

Colston has been doing really good with his bottle and is getting really close to being able to drink the whole thing. Hopefully we get to go home soon since that is the last hurdle for getting out of here!  

Yesterday there was another fundraiser for Colston put on by his Uncle Tyler (T-mo) at Livfast Exit 28 in Reno. Justin and I cannot thank him and the entire motocross community enough for yesterday.  We are so blessed and grateful to everyone for their genuine kindness and for keeping our son in their thoughts and prayers.

 

Colston has been doing good all day today. He has slowly been waking up from his anesthesia from yesterday. The doctors kept saying the same thing when he got the tube out after the Hybrid, they wanted him to be more awake and just a little fiestier before they take him off the ventilator.

Finally at 10 pm tonight they did. Poor guy has been gagging on the tube most of the day. He is so much happier to have it out. He took his pacifier almost immediately and went to sleep.

Now we have to start over on feeding. He will go back to 2 ml an hour on the feeding tube and work his way back up to the bottle.

The doctor did another echo early this morning and  said everything looked absolutely perfect and that he hopes he doesnt have to see us until Colstons surgery at 6 months.

Lets hope!

My 12 day old is way stronger than I am

I don't even know how to start this post.

I'll start writing something, and then I'll erase it. Then I will word it a different way, then erase it. So I'll just be blunt.

Colston went in for his heart cath procedure and almost died today. Or I guess did, I don't know the technicalities of cardiac arrest. 

The doctors were originally going to do a balloon dilation procedure where it looked narrow at the bottom of the stent. Once they got in there, they noticed the entire stent itself had shifted a couple millimeters and was causing obstruction.  There were obstructions in a couple other area's of his heart too. They called in the doctor that placed the stent because they weren't sure if they were going to have to reopen him and completely redo the Hybrid or not. 

They replaced the stent and then Colston went into cardiac arrest. They did chest compressions for five minutes and by the grace of God, Colston came back. The doctors said he came back strong. He got another blood transfusion also. 

The doctors don't expect this new stent to shift like the first one and they don't expect any secondary problems to arise from what happened today. He is back on the ventilator, though they are hoping to extubate him a little bit later and they are keeping an extremely close eye on him for the next 24 hours. They want to limit his stimulation and just keep him relaxed. 

Justin and I have never been so scared in our lives. I can't even begin to describe the raw emotions that we are still feeling.  It's a deeper heartbreak than I have ever felt before mixed with relief and elation that our son is still here with us, fighting CHD and its entirety. 

Heart Cath

I just kissed my son goodbye as he fell asleep on the operating table to have his heart cath procedure done.

Cross your fingers and pray they don't find anything wrong.

The procedure is going to take 2-3 hours. 

We will update soon.

Uneventful

We have had a couple very uneventful days.

Uneventful is good!! Colston has continued to do great breathing on his own. He still had the nasal cannula in but it was just giving him room air but they took it out this morning. Now the only thing he has is his feeding tube.

He is so happy to have that darn thing out of his nose. Poor guy just keeps having tape taken on and off his little cheeks.

He has had a little bit of blood in his last couple stools but they did an xray of his stomach and everything turned up fine. They said its probably just from the aspirin he is on. I was really worried it was from my milk and I was absolutely devastated at the thought of not being able to give him my milk. I feel like thats the only thing i can REALLY do for him.

His heart cath is scheduled for 10 am tomorrow. It should take around 2-3 hours. Even though they say this is a relatively easy procedure my stomach is still in knots over it but deep down I know he will be just fine.

Today a fundraiser is being put on for Colston at Dragos salon in Minden. Justin, Colston, and I are so thankful to everyone putting it on and everyone attending. It means the world to Justin and I that our son is loved so much. I lived in the Carson Valley my entire life and I will forever be in debt to this gracious community.