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. 

It's getting real

Today I started to pack my suitcase and hospital bag. As I was packing stuff for Colston it really hit me, he is going to be here in just a couple short weeks. I doubt they would do the c-section on a Saturday but part of me is secretly hoping he is born on 7/11 so that he will always get a free slurpee on his birthday. ;)

I am still doing research on my own as we are running on limited information until our next doctors appointment, but I wanted to provide you guys with more information regarding the Hybrid Stage 1 procedure that we will be having. 

The Hybrid procedure is done in the "Hybrid Suite". This specialized suite is a combined operating room and cardiac catheterization room. The baby does not require heart-lung bypass for the first stage. It can be used on smaller weight infants and for families who request Alternative Non-Blood Medical Management. Stage 1 usually is done within the first week of life.

The Hybrid Stage I consists of:

Placement of bands around the right and left pulmonary arteries. This restricts blood flow to the pulmonary arteries, thereby balancing the circulation (to the lungs and the body). This also reduces the extra blood flow to the lungs.

Stenting of the PDA (pulmonary ductus arteriosus) keeps the PDA open and maintains the connection to the aorta and the body’s circulation.

There must be enough of a connection between the top two chambers of the heart (the atria) to provide open blood flow and mixing of the oxygen-rich and oxygen-poor blood. This can be done through a balloon atrial septostomy. In this procedure a small tube (catheter) is passed across the septum between the two atria. Then a balloon on the end of the catheter is inflated and pulled back across the septum to enlarge the opening.

There is also a video on youtube that Justin and I watched that is of the procedure. Fair warning though, it is not for the faint of heart. It is very graphic. 

https://www.youtube.com/watch?v=8VPhqo5ucpo