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.