Giving Thanks this Holiday weekend....

We listen to 99.1 Joy FM and other Christian music favorites from our playlists constantly. In fact, other than the beeping from the machines and little sweet sounds from Titus, it's the only thing you heard when in our hospital room. We've probably heard the same songs a hundred times...and I actually cannot get enough of them. This music inspired by God Our Father and Christ Jesus brings encouragement to our days but also gives us just another outlet to praise our Everlasting Almighty Creator and source of hope.

One morning on the way to the hospital, Matthew West's "Strong Enough" came on the radio and it just reminded us of the strength and support we have received from so many (#1 being God) during this adventure and We just wanted to make note of some of these individuals. I know this sets us up to leave someone out so I'll apologize in advance.

Rachel, my sister, put her life on hold and came up to STL with her daughter (Ellie, 10 months) to nanny Evan. Balancing Evan's care while still dedicating as much time as possible with Titus was a major concern of ours, Rachel's incredibly unselfish and generous decision gave us peace knowing that Evan was in familiar and loving hands.

Ashleigh, Jake's sister, lives about 4 miles away from the hospital and so graciously gave up her apartment for us and stayed with her friends in the meantime. When not working, she also helped to relieve Rachel by taking care of Evan and helping out with dinners. We are very grateful for the extra time she got to spend with Evan and he certainly shows his affection as well!

Our Parents, my mom and Jake's mom and dad have all taken time away to care for Evan and make sure he is getting the standard grandparent spoiling! They made themselves available anytime we needed anything during our prenatal appointments and at the hospital, bringing snacks, meals, sweets, etc. They also kept others in the loop so that we did not have to make several phone calls during such an emotionally trying time.

Our Grandparents, all of which have been supportive during this process. Grandma Jean, gave us one of our favorite gifts during our hospital stay...a stack of prayer cards written by a 4th grade class from her friends parish school of religion. Her card mentioned that, "a child's prayer is heard and answered because of their innocence and love of God." We hung each prayer on a string in Titus's hospital room. It boosted our faith and moods on days when it was needed most! Grandma Judy sent thoughtful cards weekly throughout my pregnancy and has traveled to Columbia on her days off work to help with both cleaning house and tending to Evan and Titus. Such great blessings are they!

Our friends and co-workers...praying and texting words of encouragement, visiting us while in the hospital, providing us with meals after we returned home, and allowing Jake all the time he needed to be with his family...we couldn't be more thankful for such a wonderful network of friends and work family.

Our church family....for all the prayers, both with us on the phone, in person, or even in solitude on your own time, we are so thankful for the support we have received from you all. Special thank you's to Diana and Grant Baxter for your powerful prayers, Scott Sutherland and Bradley Williams for the calls and visits, and the McCollum's for the prayers, meals, visits, friendship, and fellowship! We are also thankful for all the yummy meals some of you have provided since we have been home. It helped a ton to have one less worry on our plates while we settled back into our new daily routines.

Titus's medical team. Bottom line, we are forever grateful for the talented hands and minds of St Louis Childrens CICU. The surgeons, nurses, physicians, front desk staff, techs, and social workers....all of you played an impressive and important part in seeing us through Titus's first open heart surgery and we honestly look forward to seeing you all again in a few months for his first corrective procedure. We truly thank you for the tough tasks you take on daily.  

Our neighbors...for watching the house while we were gone, welcoming us back home with a home cooked meal, watching and caring for Oliver when needed, and helping with Evan and Titus in our first few weeks back home.

Fellow Heart Families, you are a constant source of encouragement and help us to not feel alone in our journey. We have met some amazingly strong families and have built friendships with others that we wouldn't have otherwise had the opportunity to meet. Some of our friends are still in the CICU and we continue praying for each and every one of you daily! It has been amazing to witness the works of our God in each of our lives.

Complete strangers...we received cards, prayers, donations, and messages from complete strangers. The love that flows from these actions has touched our hearts and we are constantly looking for ways that we can give back.

The 4th grade prayer notes for Titus...

Family photo!

So what happens next?

I have had a lot of people ask about what the doctors did this surgery and what will happen in the future...

So here is a picture of Titus's heart before surgery and after...

The first surgery was palliative, meaning it did not actually repair anything. You could think of it like putting duct tape on something--a temporary fix. They opened his chest, took a look at the heart to make sure it was in line with the ECHOs they completed and then they placed a shunt (a 4mm goretex tube) to connect his aorta to his pulmonary artery. This shunt allows a blood flow much like when he was in my womb. It is not 100% since there is still a hole between the ventricles allowing oxygenated and non-oxygenated blood to mix, and both the aorta and pulmonary artery are still coming off the right side of his heart BUT it directs blood flow to the lungs since his pulmonary artery is closed and keeps him stable for the time being. The down side is that this shunt will not grow with his heart and as he grows, it will eventually be inadequate in supplying enough flow to the lungs.

So when is his next surgery? That depends. The faster he grows, the sooner that will be but they estimate sometime between 4-8 months of age. The cardiologists and surgeon have not committed to a certain procedure as the next step for Titus. The plan is to let him grow as much as possible and then decide if a 4 chambered heart is possible or if we need to go the 2 step, 3 chamber Glenn/Fontan route.

How do we know when he is ready for the next surgery?  His oxygen levels will tell us when. For heart healthy babies and adults, oxygen levels are 100%. Titus's will never be 100%, and with his shunt they should be between 75-85%. Anything lower then that indicates readiness for the next surgery. As we get closer to that time he will become more cyanotic or blue, which yes is VERY scary! We have made it clear that we would rather be more aggressive and have the surgery sooner than chance him going into cardiac arrest or have other body systems suffer due to inadequate blood flow, but this remains a balancing act with his cardiac team. His oxygen levels were running 87-90 when we came home and have been running around 83 the last few days...he is growing much faster than anyone anticipated!

Boo Boos

Titus has developed an infection in his incision. It was healing so nicely since we left the hospital but then I noticed last week that it was starting to get a bit red at the bottom, as opposed to the pink it had been. We gave it another day to see if it went away becuase I had been holding him chest to chest a lot and it was possible a button or zipper could have rubbed it the wrong way. However we ended up having to take him in to the cardiologist and they confirmed it was indeed infected. They immediately ordered Ty on an antibiotic, Cephalexin, to clear it up. I was not thrilled with this and asked for any alternatives but they did not have any. I am not a fan of antibiotics since they also destroy your bodies good bacteria but we didn't have much choice this time. If the infection got worse and spread into his sternum, it could result in a serious infection that could affect all future surgeries as well.

We are not sure what caused the infection....he could have scratched it himself, Evan could have touched it at some point as he likes to point to his chest and say "Boo Boo", bath water could have contributed, our home nurse could have passed bacteria onto it...its pretty much impossible to tell. But I will most definitely be watching it like a hawk now and keep it covered all the time until it is 100% healed!

The learning and praying here continues.

Our New Normal

On top of the normal newborn care like bathing, feeding, pediatric wellness visits, etc. Titus gets some extra care while at home:

1/4 Aspirin per day, crushed and then dissolved in dropper
0.45mL of Lasix in dropper (diuretic that should only be needed for a few weeks)
1 mL Vitamin D Drops
One 10 minute session per day on the Pulse Oximeter to measure Oxygen levels.
Tracking diaper changes and weight
Periodic monitoring of breaths per minute and heart rate
Changing his incision and chest tube dressings (for a few days)

We also have bi-weekly visits scheduled to see our local pediatric cardiologist Dr Dyke and a home health nurse visit twice per week for the next 6 weeks to do additional weight/vital checks.

While there is a lot of monitoring at this stage, it is rather basic and not near as much as one would imagine after having something as serious as heart surgery! This monitoring will continue until his next surgery in a few months...which we are trying not to think too much about.

Overall, Titus is doing spectacular and continues to crush the expectations of his medical team. He is even gaining weight faster than many heart healthy babies, another testament to his strength through the hands of God!

Weight Check: Ty lost about one pound in the hospital due to surgery and lack of feeds for a couple days. When we left he was right at 9lbs. Today 11/10/14, just 21 days after discharge, he weighs in at 11 lbs even! Go Titus go!

Flu Season

Flu season is upon us and I know lots of people get vaccinated in hopes of avoiding the flu. Did you know, if you have had the flu mist you can shed the live virus for up to 2 weeks? Therefore, we kindly ask that if you are sick or have received the flu mist vaccine, please keep your distance if you see us out and about and wait two weeks if you decide to visit. We have to be extra vigilant in protecting Titus from any bacteria or viruses due to his heart. Even a mild cold can mean serious business for our little guy. Thank you!

There is no place like home...

Sunday 10/19/2014

After 4 weight checks proving weight gain I was eager and ready to get us home. I missed Evan, my bed, our dog Oliver, home cooked meals, our church, everything about home...and I was sooooo over the hospital. It was Sunday and I was not about to begin another week here just so they could continue to weigh him. I was confident he was going to be just fine...

It took quite a bit of pestering and sarcasm to get discharged but I managed to make our point and get our wishes granted, we were going home!! They set us up with his meds, care binder, instructions, and supplies and we were on our way!

We departed from the hospital at 4pm on Sunday 10/19. It felt so strange walking out of the hospital with Titus. He was 2 weeks old already and had never breathed outside air, seen the sunset or sunrise, heard the chirps of a bird or rustling of the leaves...I was so excited for him to finally experience Gods gifts!

We packed the cars, Evan riding with Jake and Titus with me, and began the drive home. Ty made it halfway home and then busted out in a serious cry...It began at Mineola hill just past the Hermann exit so I wonder if it was the change in pressure that caused it or if he was just hungry...either way I experienced the first "oh crap, what is his heart rate, Oxygen level, respiratory rate?!?! freakout!!!" And this time, we had no monitors to check, no doctors or nurses to ask, we were on our own...I had to pull off to the side to calm him and we were still a few miles from the nearest safe exit to stop at ...what do we do?!? We can't let him keep crying but we cant sit on the side of the road either!!! I cried, prayed, and sang to Ty all the way to the Kingdom City exit. It seemed like forever and I felt so helpless. I learned quickly that things ARE going to happen that are completely out of my control and make me feel helpless. I need to focus on staying strong for him, making the best choices within my control, and then putting all my faith in God for those things out of my control. I need to completely hand Titus over to Him, pray over him, and relinquish each item of concern to Him. Otherwise, I am going to go crazy trying to manage these challenges on my own. It's not easy to do but God truly does provide a real sense of comfort in times of need if you ask for His hand. For that I am thankful.

Fortunately, once he was fed, the rest of the trip was uneventful! We were welcomed home with a warm meal by our awesome neighbors who had been watching our house while we were in St. Louis. It was 8:00pm and I hadn't even thought about dinner...thank goodness for their thoughtfulness because our fridge and cabinets were bare. It would have been peanut M&Ms, frozen veggies, and ice cream for dinner!

Psalms 34:17-19
Yes, the Lord hears the good man when he calls to Him for help, and saves him out of all his troubles. The Lord is close to those whose heart is breaking; He rescues those who are humbly sorry for their sins. The good man does not escape all troubles - he has them, too. But the Lord helps him in each and every one.....

 Sweet baby feet snuggled in bed....

He is settling in nicely...

Even a few smiles already!