Well, we got Colston's next surgery scheduled. His heart cath is on January 21 and his surgery January 26. 

I can't believe we are already here. I can't believe he is 5 months old today. It seems like just yesterday I was 22 weeks pregnant and we just got told there was something wrong with his heart. 

This year has been so crazy, there are moments where I forgot Justin and I got married this year! It seems like an entire lifetime ago. 

It's a funny thing, you know. It feels so normal to say things like, "gosh I can't believe how big he's getting" or "I can't believe how old he is". It's little things like that that heart parents cherish because we didn't know if we would make it this far. 

We were given about a 75% chance that Colston would make it to his second surgery and here we are, just a few weeks away. He's gaining weight like crazy and hitting all of his milestones. Apparently he didn't get the memo when they said there's a decent chance he will be delayed. 

Part of me is obviously dreading his surgery and just wants time to stand still. The other part of me just wants to get it over with so I can have my perfect little boy back at home. 

The good thing about his next surgery is that the recovery time should be (knock on wood) much shorter than last time. Colston did however surprise everyone with how well he did last time too. We were told to expect to be there for at least 6 weeks and even after two cardiac arrests and going on the ventilator four times we were home in 4 1/2 weeks. 

The cardiac interventionalist said it's the stubborn ones that make it. I've never been so thankful for my stubbornness in all my life. 

Justin, Colston, and I want to wish everyone a Merry Christmas. I hope you all have a wonderful holiday!

I can't believe it has been almost a month since I last posted. I am so sorry! 

Life has been hectic this holiday season!

Colston had his first turkey day

 and he turned 4 months!

He now weighs 11 pounds. The cardiologist is very pleased with his weight gain. We now no longer have to worry about him not being big enough for his next surgery. 

Speaking of his next surgery,  I am waiting for the phone call from the doctor's in Las Vegas to schedule his next surgery for January. 

Part of me is completely dreading it (of course) but then another part of me just wants to get it done and over with.

His stent has been looking a little narrow the last couple of visits which the cardiologist said is to be expected because he is getting bigger. His oxygen sats have also gradually been getting lower every visit as well. Hopefully after his next surgery they even out. 

I have already packed away the clothes that don't fit Colston anymore, which are his preemie and newborn size clothes. It was so bittersweet. I am happy that he is growing but it is just too fast! The next thing we know he will be graduating high school!

We hope everyone had a wonderful Thanksgiving! We will update soon!

Vote for Colston!

I don't know why I didn't think to put this on here sooner!

Colston is in a Halloween costume contest put on by Sister's by Heart and he is currently in 7th place. Voting ends tonight at 9 pm Eastern time. 

Please vote! 

Can I tell you a secret? 

I voted for every kid that entered! They're all just so cute! 

Click here to vote! All you have to do is "like" the picture to cast your vote. 

Thank you! 

Hi Everyone.

Sorry it's been a while since I have made a post. I think I've finally found my routine and how to balance Colston's needs and being a stay at home mom.

I have to admit, being a stay at home mom is a lot more difficult than I realized, especially with a heart baby.

 Of all days for my to forget his pacifier, it was appointment day. Colston weighed in at 8 pounds 11 ounces!

He was not having it during his echo though. It was hard for the cardiologist to get a good look but he did see that Colston's stent might be a little narrow. 

I say might because Colston's crying could've made it look like something was there when it wasn't. His doctor ordered what's called a BNP blood test where Colston get's pricked in the foot. This test basically measures the stress on the heart. Thankfully those numbers came back normal so his doctor isn't concerned but it is definitely something we will be checking again at our next appointment.

If those BNP numbers came back out of the normal range, then his next surgery would be sooner. But for now we are still planning on his next surgery being in January when he is about six months. 

I can't believe we're already half way there! 

Here's some pictures of Colston from the last few weeks 

Colston had a great check up at the cardiologist yesterday.

We went two weeks in between appointments this time instead of our usual 7-10 days in between and I have to admit, I was getting a nervous. Luckily, Colston is doing very well. His oxygen sats are still in the high 80's and he weighs 8 pounds 1 ounce now! He gained a whole pound since his last appointment! 

The doctor is so pleased with his weight gain and we no longer have to feed Colston every three hours. We can feed him whenever he is hungry. This was so great to hear because it made me so sad to wake him up when it took so long to get him to sleep. 

The doctor also got paperwork going for our next surgery. That was hard to hear. Obviously we knew it was coming but I can't believe it's approaching so fast. I'm not ready for it, but I don't think I will ever be ready. Colston is much bigger and stronger than his first surgery and I'm happy that the doctor is so confident that he will do well.  

Giving Back

Hey everyone. 

Justin and I have been throwing around a lot of ideas lately on how to give back to the CHD community and raise awareness. 

We have donated some much needed items to the local Ronald McDonald House (and will still continue to do so) but we still want to do more. So I came up with an idea. 

A cookbook.

The cookbook will contain heart healthy recipes that will be submitted by people who either have a child or sibling with a CHD, or even themselves. Along with each recipe there will be a short dedication to their CHD warrior along with a picture of them (if you so choose). The cookbooks will be no more than 100 pages, depending on how many recipes we get, and $25.00.

 75% of the proceeds will go to The Children's Heart Foundation.

I already have a few recipes to add but I need more! They can be for any meal time. 

So fellow heart families, if you have a recipe you would like to add and a CHD warrior you would like to recognize, please e-mail me at j.k.krische@gmail.com 

If you don't have a recipe to add but would still like to recognize a heart warrior, just send an e-mail with the same requirements and I will add it to a recipe I already have. 

Thank you so much!

We decided to break up

That's right.

After three months of exclusively pumping, I decided to call it quits. It has been an extremely difficult decision and one that I did not take lightly. 

I don't know why but part of me feels like how much milk I can produce is a private thing and I always got a little uncomfortable when people would ask me how my supply was and if Colston was able to latch. But now that I have decided to let my milk dry up, I feel like it's important to explain why. 

Colston and I were robbed of the skin to skin, mommy-baby first time meeting moment, immediately get the baby feeding moment.

After he got cleaned up and weighed after birth, a nurse held him up to my face for only about a minute and then he was whisked away to the NICU. They put in a line for him to get nutrients through because he couldn't eat before his surgery. 

Now, normally moms get the stimulation to get milk flowing starting on day one, whether it be from baby or the pump. I was so sick after my c-section that I wasn't even coherent until about twelve hours after Colston was born, which resulted in me not being able to see him until then. They wouldn't let me see him in the NICU until I hadn't thrown up for at least an hour. 

I didn't try pumping until after his Hybrid surgery when he was three days old. 

Once my milk got flowing, I was able to produce 3-4 ounces per pumping session every 2-3 hours. It was great.

But then more and more problems were happening with Colston in the hospital and I didn't want to leave his side so I was going 4-5 hours in between pumps, sometimes longer. By the time we left the hospital I was getting 1-2 ounces per session. Not as much as before, but still not bad.

Now, for whatever reason, I am lucky if I get 10 mL per session. I have tried lactation cookies, tea, power pumping, Fenugreek....you name it and I have tried it. I even tried having Colston latch a couple times but he wasn't having it, a bottle is so much easier to get milk out of.

 My doctor just prescribed me Reglan to increase my supply but after doing some research I have found that it has some serious side effects that although are uncommon, I am not willing to chance. 

My low supply has been so stressful and has really taken a toll on me emotionally. When Colston was in the hospital it felt so good to pump for him because I felt like it was the only thing I could truly do for him. Part of me feels like I am failing him by quitting. The last couple weeks I have told myself I was going to quit pumping numerous times but always convinced myself to keep going because at least he was getting SOME breast milk in his bottles. As soon as it would be time for me to pump again, I would feel so much hate and disdain that I would get almost depressed. 

So after many conversations with my amazing and supportive husband, I decided to trade all the time I would spend pumping to snuggling on Colston and focusing on my job as a mother and a wife. Colston deserves a happy mom and Justin deserves a happy wife, not one who is continually upset and stressed.

Does he look upset about it?

I finally understand

Colston is 10 weeks old today. 

Justin and I just celebrated six months of marriage.

I finally understand the meaning of "time flies".

Instead of weekly appointments with the cardiologist, we now see him every 10-14 days. Colston's heart still looks great right now. He also weigh 7 pounds 1 ounce!! He is growing so fast and is finally out of all his preemie clothes!

Just in the last week he has been smiling like crazy. He is also starting to coo and I am just waiting for his little chuckle.  With everything that he has gone through so far, it is so amazing to see how happy he is. Not that I want him to be going through this whole ordeal, but I am thankful that it is when he is too little to remember it. 

There's not much else to report right now. I am so thankful that he is doing so well and the only thing I have to update is his new weight. 

I hope whoever is reading this has a great day :)

Colston has been doing great! We see the cardiologist about every 10 days or so and this last Friday Colston weighed 6 pounds 5 ounces!! A whole pound since he was born two months ago. We are so thrilled even though it's a slow climb, but it is a forward climb and that's all that matters. 

The doctor does an echo on his heart every appointment and Colston's stent and bands look perfect and everything is working as it should right now.  

One of the hardest things about him doing so good, is constantly having the thought in the back of your mind that something bad is going to come out of nowhere and it will set us back.  Trying to be optimistic all the time takes a lot of energy when you read so many stories of other heart babies that all have different types of setbacks and all you can wonder is, "I wonder if that is what ours will be."  It seems like every baby has a set back of some sort, be it a leaky valve or the worst, cardiac arrest. We've already had the latter so I'm hoping that isn't in the cards for us anymore. 

It is a difficult task talking to other families with the same heart condition because no two cases are the same.   I think I have scared myself into always thinking the worst from talking to the moms in my support groups.  Some of them have babies that had to go home on oxygen, or with a feeding tube, and also on six or seven different medicines. Colston is on two and was over saturating his oxygen.  I kept thinking...are we that fortunate? There's no way. The doctors are over looking something. For as bad as this is, we're doing really good. 

There was a small period of time where I let my paranoia get the best of me and I was in a constant state of worry. Ask Justin how many times I have asked him if he thought Colston looked blue, or if his breathing seemed shallow. But I had to stop doing that, as hard as it is, because it was taking me away from appreciating that he is here now and not taking for granted this present moment. He is still here with us and instead of constantly thinking and worrying about the worst, I need to spend my time looking at his big brown eyes, snuggling him while I can, and thanking God everyday for giving me one more day with my son. 

No, the worry will never truly go away and we are still very early on in this journey, but it makes it an easier road to travel on when you have great doctors, an amazing husband that you can vent all your frustrations and worries to, and God. The power of prayer is an incredible thing and we are so blessed that it has been pointed our way.  Every day with Colston is truly a gift and one that we promise to cherish everyday. 

Colston has been doing great adjusting to life at home. We are still trying to get a solid routine down but with a baby, is there ever really a routine?  

The cardiologist was very please at his follow up appointment yesterday. Everything is still doing its job and all blood flow is going where it is supposed to. 

Yesterday marked six weeks since his open heart surgery. We got cleared to start doing tummy time and we can now pick him up under his arms (still very carefully though). Even though the doctor says the sternal precautions are lifted, it makes me nervous.  He is eating so much more now too, we just need the weight to stick. He has only gained three ounces since his appointment last week but at least it's still a step forward. Colston is getting longer too! Most of his preemie clothes are too small now. 

We can now add a small amount of breast milk to his formula. Even the cardiologist didn't think he had a milk protein allergy but just to be safe we are going to start out with just a small amount and we have to keep an eye out for bloody stools. 

It's humbling having a child with special needs. I know several women who have had babies all around the same time as us and it's interesting to see how our milestones differ. I go on facebook and see other moms who's babies have been doing tummy time since they were just a couple days old and can lift their head up. Or other babies that are smiling and have found their voice. 

It's always exciting seeing a baby do things for the first time, but when you are told your child will be developmentally delayed, there's an immense sense of joy when you witness them reach their milestones because you never know when it will happen or just how delayed they will be.  It makes you appreciate the things they CAN do. 

Colston's feedings for example. When we left the hospital, he had to take at least 48 mL a feeding.  

Now he takes double that. 

He eats just a little bit more every day and it makes Justin and I so proud.

But it's not without a lot of patience. Heart babies have a more difficult time digesting food so we have to give him breaks every 10-15 mL's and we also can only give him 30 minutes to eat. We also can't feed him on demand, which with a growing baby is extremely difficult because I have noticed him getting hungrier sooner than his three hour mark. 

Every day is an adjustment to what he is capable of. Everything is on his terms and his terms only.

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.

My Big Boy

Colston got to try his first bottle today. 

I'm so proud of my baby boy. He drank a whole 5ml from it. I think we would've been able to get him to eat more had they stopped his feeds on the feeding tube earlier. The speech therapist had wanted to come in yesterday to work with him and make sure he can get sucking and swallowing down before we take the feeding tube out, but he was mr. cranky pants yesterday and just did not want anything to do with anyone so they held off. They are going to be coming by everyday and working with him for about 20 minutes at a time until he gets it down. 

He is also already working with an occupational therapist to work on his reflexes and muscle movements. They love how strong and feisty he is and they have shown us a couple different ways to help ease his pain and help soothe him a little better.

His bilirubin is now down to 8 so he got all those crazy lights off of him today. We were so happy because the only time we have gotten to see his precious face in the last four days is when we held him for about 30 minutes and the nurse let us take his mask off.

Colston had another echo today and the only thing the doctors noticed was a little bit of narrowing where the stent was placed. When they do his heart catheterization early next week they will be taking a better look at it and then another time doing a balloon dilation procedure to stretch it out. Thankfully this is relatively easy and he does not have to be opened back up for it. 

As far as set backs go, we are so thankful this is a relatively minor one. It could be a whole lot worse so we are thanking our lucky stars that as of right now his heart is doing exactly what it should be after the Hybrid procedure. 

It's been a while since I have picked up a camera (besides the ever-so-convenient camera in my smartphone). But with the birth of Colston I dusted it off, and started snapping away.

I put together a couple of albums of Colston's journey so far, and more to follow.


-Justin


Here----> Welcome to the World, Colston



and Here----> Mommy's First Hold

One week already

Colston is a week old already!

He's been doing extremely well breathing on his own. He hasn't had the breathing tube in all day and actually took his pacifier. Now he cries everytime it falls out. He gets that from his mama, she loved her pacifier as a baby.

Justin and I actually felt like parents today. We soothed him to get him to stop crying (which is insanely difficult when you can't pick him up to rock him) and I got to change his diaper everytime. Call me weird, but I actually got excited to get poop on my finger.

We are just waiting on a date and time for his heart catheterization procedure. This procedure is done to make sure blood is mixing properly in both upper chambers of his heart.

A speech pathologist is coming tomorrow morning to see if we can get Colston to take a bottle. The doctors haven't given us any time line on when we get to go home but the biggest factor on being able to go home is Colston eating and continually gaining weight. Cross your fingers he takes the bottle like a champ tomorrow!

Complacent

So Colston has the breathing tube back in.  He decided to get "complacent" as the doctors call it and stop breathing, which apparently is to be expected with pre-term babies and babies who just had a chest tube taken out.  

I was sitting there rubbing his hand and his machine started beeping. We hadn't been back in his room ten minutes and his oxygen saturation went from 89 to 50 in seconds. Justin ran to get his nurse who was with her other patient and grabbed the first nurse he saw in the hallway. 

Suddenly there were five nurses in there, one breathing for him with a mask and the doctor tells us he needs to put the breathing tube back in and we need to leave the room. 

Sitting in the waiting room was the longest ten minutes of my life. The doctor came in and assured us that Colston was fine and that this is a typical thing, they just expected it to happen within hours after the tube was taken out, not the next day. He also said that while we were gone, Colston had been holding his breath for short amounts of time, which put the nurses on alert that this was probably going to happen. 

It also didn't help that Colston hardly had any sustenance in his system. They took out his UAV and UAC lines but didn't start him on Pedialyte for a few hours. He is now able to get breast milk through his feeding tube so hopefully he will start gaining weight and it will give him the nutrients he needs to not get so complacent. They are also going to give him caffeine. Poor guy was probably just too tired. He has had a crazy four days. What he has gone through in his short four days of life would take down a grown man.

We are so thankful at how fast the nurses and the doctor reacted. It's hard seeing how happy and content he was last night and seeing him sedated now. He was just staring at us last night and grabbing our fingers. The nurse had told me earlier I would probably get to hold him today but that's not an option anymore. I was so excited but he is safe now and that's all that matters. 

Jaundice

Colstons doing good this morning. His billirubin was up to a 21 (normal is around 10) so hes under the lights til his jaundice goes away. They said about 3-4 days since his was so high.

They took his dressing off and his incision looks great!

And I get to hold him today! I cried when the nurse told me. She said i can help change his diaper and do as much as I am comfortable with.

We are so thankful our little man is doing so good! They always tell us to expect set backs but we are just taking it one day at a time and being thankful that today is a good day.

Still doing good

Well Mr. Colston is still continuing to amaze us. 

He is doing so well even the doctors are a little surprised. He is still intubated from surgery this morning but he is not on any pain meds or sedation. They say it just sometimes takes infants a little longer for the anesthesia to wear off. 

He opens his eyes and gets fussy every once in a while but then he falls right back asleep. They want to see him a little bit more feisty before they take the tube out. 

He also got 20cc of blood today. They said that is also pretty standard after a large surgery like he had. 

It is so hard to say good bye to him every night but it's hard when I am still in patient and Justin has to go back to the Ronald McDonald house so we don't lose our room there. We take comfort in the fact that he is doing so well and the nurses that he has had have been nothing short of amazing. 

Good news!!

This morning was the hardest of mornings leaving our son with the doctors. He was sleeping so peacefully.

His surgery started at 8 this morning. It is now 11 and the doctors just called and said everything went great and there were no complications!!! Thank god!!

We cant wait to see our little fighter!!!!

Welcome to the World Colston James

Colston James is so beautiful!! He was born at 9:56 am and is doing so much better than the doctors thought he would. He doesn't need the ventilator right now because he is breathing so well on his own, but he will probably be on it after the surgery. He weighed 5 pounds 5 ounces and was just over 17 inches long!! 

Justin got to cut the cord too! He was so happy because they told us he wouldn't be able to since they didn't think Colston would be breathing so well. I got to kiss Colston before they took him to run tests and get settled in the NICU.  He was crying until they cleaned him and held him up to my face, then he immediately stopped as soon as our faces touched.  I was crying though.

After that I didn't get to see him until 9 last night. I was having a really bad battle with nausea and they wouldn't let me go until I hadn't thrown up for an hour. The meds were making me really drowsy too so it was hard for me to keep my eyes open for more than a few minutes. 

Colston will be getting the Hybrid procedure at 8 AM tomorrow and then his heart catheter early next week. The surgery should take 2-3 hours. We are nervous but he is such a little fighter, I just know he is going to surprise everyone with how well he does. 

Poor Justin has been running back and forth to the NICU to check on Colston and to me check on me in recovery. I've been working really hard on getting up and moving though so Justin and I got to spend a good amount of time together with him today. The grandparents and Auntie Jessica got to see him today too! 

He was so fussy tonight but as soon as I touched my finger to his hand, he grabbed it and put it to his face and wouldn't let go. 

It's still so hard for me to look at him and know he is mine. He is just too beautiful for words. We probably won't be able to hold him for a few weeks but that's okay, as long as he is safe that's all we care about. 

We're Having A Baby Tomorrow!

AHHH!

It is so insane to think that in less than 24 hours Colston will enter this big ol' world. We are so excited to meet him and see his sweet little face. 

We had our last doctors appointment this morning and Colston is approximately 5 pounds 4 ounces!!

He's still measuring small for 37 weeks but we are so ecstatic at how much weight he has gained. To us, hitting five pounds is a huge deal! The bigger he is, the less chance he has of being on a ventilator and even if he does have to go on one, it wont be for nearly as long. He's been having the hiccups like crazy the last two weeks which is good, because that means he has been busy practicing breathing.  We gotta get those lungs strong! 

We still are just at the very beginning of this road. Just when Justin and I have learned how to deal with a high risk pregnancy, we now have to learn how to parent a medically fragile infant. We have to accept that he is going to hit his mile stones a little later then other babies do. We have to learn which medicines do what, what time to administer them and how. We have to learn what signs to look for and what hue of "blue" is still within a normal range.  We have to keep an eye on his oxygen levels. We can't let him just "cry it out" like a normal baby because, well, he isn't a normal baby. 

It's going to be a lot to handle but we know that Colston was given to us for a reason. We were chosen to be this little man's parents. He has already taught us so much about ourselves. He has already taught us that as cliche as it is, it's really the little things in life that matter.  

We have been contacted by some people back home and there are going to be a couple fundraisers to help Colston and his medical bills.  Justin and I can not even begin to express how blessed and thankful we are to the community and everyone that wants to help our son. It warms our heart to know how loved he is already.  

We can only hope to pay it forward one day.

It's not a "fix"

           To say this journey has been emotionally and mentally exhausting is an extreme understatement. Justin and I have only taken our first few steps down this long road and we are already feeling the weight on us, especially with Colston's entry into the world just a week away. 

           There are so many questions we get asked when people find out about his heart condition. There's the typical, "What is HLHS? What does this mean for when he is older? What causes it?" Etc.

           

           I truly think the most emotional part is explaining to people that none of these surgeries are a "fix".  I know people mean well when they say, "At least there are surgeries and treatments to fix his heart." But no. 

There is no fix or cure for HLHS or any CHD for that matter.

We literally are just buying our son some time at life. How much time at life? We will never know.

I hope more than anything in this world that our son outlives us and I am so thankful we have the technology that we do. I couldn't imagine giving birth even just 30 years ago when surgery wasn't an option. 


On a lighter note, I got to tour Sunrise Hospital today and I am so happy and feel so comfortable that Colston will be well taken care of. 

8 days and counting. 

July 22

We got our C-section date today! Colston's birthday will be July 22. 

He is still measuring under the 3rd percentile. He weighs 4 pounds 3 ounces. Justin and I were so happy to hear he hit the 4 pound mark. One step at a time though, it's all in baby steps. Now we are hoping by the time he is delivered he will be close to 5 pounds. 

We met with Dr. Ciccolo yesterday, he is the heart surgeon that will be doing the Hybrid procedure. He explained everything to us in great detail. We are very pleased with the success rate of the Hybrid procedure. It is supposed to be an easier recovery for Colston versus the Norwood, however when he has the second procedure at 6 months (the Norwood and Glenn combined), his recovery will be a little longer. 

As soon as Colston is born he will be taken to NICU. They will do all new measurements of his heart and because he is so small it is very likely that he will be put on a ventilator right away. 

One of the hardest things right now for Justin and I is the fact that we don't get to hold him. He goes straight to a breathing machine. We know that is what is best and safest for him so of course we are all for it, but it doesn't make it any easier. 

Once they take all new measurements of him outside the womb, he will be put on prostaglandins to keep his Pulmonary Duct open. Colston will have the Hybrid procedure done sometime the first week of life but they won't know a date until they monitor him and run all their tests the first few days. 

Until then, I still have a few doctors appointments to monitor his heart rate and next week we get to tour Sunrise Children's Hospital. 

We are really trying our best to take everything one step at a time and not get too far ahead of ourselves. We were told to expect Colston to be in the hospital for at least six weeks, anything before then is a miracle. When he gets to go home depends on how he does feeding, breathing, and growing. They have had babies go home after two weeks and they have had babies that weren't able to go home for six months. 

One of the hardest things about this condition is that no two cases are the same. As much as we want answers, we can't have them because nobody knows what the right answer is. I can't tell you how many times Justin and I have heard "Let's wait and see."

Only time will tell what is meant for our little man but I am so confident he is a fighter. He had his hands in fists at his ultrasound this morning, that has to be a good sign. 

As always, Justin and I love and appreciate all the prayers we have gotten so far. Our support system is truly amazing and we could not have been blessed with better family and friends.  I have met many other heart moms online through support groups as well and they are extraordinary women. 

We are so thankful for each and everyone of you.