Update

Catch up Updates:

-Titus's incision has healed up nicely, in fact we were off antibiotics in 7 days!
-We also were given the okay to stop giving him the Lasix since he doesn't need it anymore!
-We are now down to a daily aspirin and probiotics, yippee!
-Our home nurse is only checking in weekly now, one less appointment I have to remember!

In other news, we unfortunately got our first taste of how serious it can be for a heart baby to be sick. Evan and I caught a virus and even though we were careful, Ty ended up getting it too. His oxygen levels dropped down to 74/75 at night while congested and his eating slowed to one very weak feed per night....however this thankfully did not affect his weight gain and after a couple days of elderberry syrup and applying and diffusing some essential oils, we were all on the mend and Ty's oxygen levels jumped back into the 80's. I am so thankful to have access to natural options to use on our family!

I had a dear friend visit the other day and she brought something to my attention that I had not acknowledged. Even though God dealt us this challenge, He is also still providing for us and continues to show us His love everyday. He has provided Titus with exceptional weight gain, which not only made his recovery easier but also continues to make things easier at home as well. I would love to take all the credit for this super duper breast milk, but its more than just me and my will. As pro breast feeding as I am, I know that it takes more than just will to develop and maintain a breastfeeding relationship with a child. More pieces had to fall into place for this to work, and even more pieces for it to continue. And boy is he a pro...We discovered last week that he gained almost a full pound in just 7 days! He is now tipping the scales at over 14 lbs and is solidly wearing 6 month clothes. Okay Titus, you can slow down a bit now....

He loves being close to mum!

Brotherly love!

Such a ham!

Smile!

Feeling so very blessed to be cuddling these smiles today!

Who am I to judge?

I attended a MOMs group at our church recently and the topic discussed was our role as teachers to our children. We discussed what made a good teacher good, and a bad teacher bad. How Jesus was a great teacher and what he used to teach. We also covered intentional teaching--those moments we recognize an opportunity to teach our children a lesson, as well as unintentional teaching--when they overhear or see how we act or what we do on a daily basis. They learn just as much if not more by watching those around them, and because children spend most of their time with their parents, by default we become our children's most influential teachers.

Then a friend posted this on facebook the other day and it really touched my heart and got me thinking...

"On the way to a friends house this morning I was passing by Walmart. Standing at the entrance was a man with a ripped up coat. It was wet and snowing out. I had to pull over for a second. For me, it was one of those God moments you can feel..... you get emotional, your heart is beating hard, and you know you are supposed to do something. After I went through the ATM, I parked and cried and prayed. When I looked up I watched MANY people drive up past him and stop (he was standing at a stop sign) before continuing on in their warm cars. 
How can you do that? How can someone drive right past him and STOP and completely ignore, looking away from him like he didn't even exist...like he wasn't a human being with a beating heart like us. They made a point to pull forward past the stop sign so I guess they couldn't see him. I guess if you can't "see" him he wasn't really there.
I get so frustrated by those who say "Well, what if he is faking it?" I just can't dwell on that. What if he isn't faking? What if he lost his job? My family has been very blessed with a home, income, vehicles, food, and (for the most part) health. Myself, my husband, or my children don't go without.
Anyway, I step out of my van to hand him some money and his hands were so cold. He was wet and he looked so tired. I just wanted to hug him and take him in my van but I know that wouldn't be safe for my kids. He just looked at me and said thanks. I don't think I will ever forget his eyes and how tired they looked. If you are the praying type, please say a little prayer for this man."

I am ashamed to admit it but I have been that person...that "what if he is faking it?", "he looks like he is doing okay", "he will probably just spend it on booze" person. In fact, it was just the other day when my husband and I were riding in the car and saw a man on the off ramp with a sign. We both were prompted to give, and had just had a conversation on how we should give more....but then those thoughts crept in as we reached in our pockets...what if? Does he really NEED it?...by the time my husband convinced me we should just give him some money, it was too late--we didn't want to hold up traffic so we just drove by. And so did everyone behind us. Wow. Who am I to judge? Did Jesus judge? Is this the example and mindset God would have for us? Is this the example we want to show our children? Absolutely not, and I don't believe anyone reading this post would choose any different either. 

Really does it matter his circumstance or his next action? Should I be judging that? No. We will all answer to our decisions one day in front of the Almighty, me included...even to my decisions to pass by someone standing on the roadside declaring their needs. And honestly I feel much better giving with a whole heart, than I would wondering if he really needed it or not. Jesus didn't judge. He gave, and gave abundantly. Even when there was little to give. We gave to the next man we saw further down the road but my conscience was still not clear.

Proverbs 28:27

He who gives to the poor will never want, but he who shuts his eyes will have many curses.

We have been blessed with so much more than we could ever ask for...things that can be bought like our house, cars, food, and clothes on our back...and things that cannot be bought, like my husbands job, our health, our children, our faith....we continue to be blessed with each day that passes and it is up to us to continue that ripple effect by blessing others.

To teach our children unconditional love, we decided to assemble care bags for those we encounter this season. We are including things like toothpaste, toothbrush, razor, soap, a bottle of water, snacks, shampoo, Qtips, and chapstick in a ziploc bag and keeping them in our car. We will also add a bag with a few pairs of gloves, socks, and hats to pass out when the opportunity presents itself. Socks are the most requested item by those who are homeless. I would like to eventually include pocket bibles. Not all items have to be brand new, maybe you have a pair of fuzzy socks you don't find yourself wearing anymore...maybe you have a new pair of gloves and no longer need your old ones...also if you watch for sales throughout the year and coupon for the items you can get most for nearly free! Can you imagine the difference you can make in someones day just by handing them a simple bag of the items and luxuries we take for granted daily? 

If you have the means this year, put together your own bag to give while you are traveling to your family's Christmas dinner. I bet you see more than one person that could use the extra gift. 

Give and give abundantly this season. It doesn't matter how much, just give what you can and give with your whole heart. Our world and our children need to see this more than ever!

James 2:15-16

If a brother or sister is without clothing and in need of daily food, and one of you says to them, “Go in peace, be warmed and be filled,” and yet you do not give them what is necessary for their body, what use is that?

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!