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.