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!

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!

Final Days in the Hospital

Saturday 10/18/14:

My mom took Evan for the day so Jake was able to make it to the hospital to see our new digs! It was like a breath of fresh air having him around again...I cannot tell you how many times I sat down to hold Titus and would get thirsty and see my water bottle all the way across the room!

As I mentioned, Titus ended up pulling his NG tube out Friday night and during the rounds Saturday morning the doctors decided they would not replace it right away and allowed me to feed him ad lib. Hallelujah! We have 2 weight checks per day, 8am and 4 pm. So long as he is gaining then we can go home! Easy enough right??

Apparently, even though they have been all over how and how much he is being fed, they don't care to monitor how his weight is checked and the accuracy of those checks. This was seriously disappointing as there were multiple opportunities for error and we could have probably been in a world of trouble had I not voiced my concerns...I mean they are monitoring grams at this point!

My observations:

1. A different nurse is weighing him each time, sometimes even with a different scale. Certainly there is a difference from scale to scale.

2. Some nurses were weighing with his blood pressure cuff on or his lines hanging on the scale, some were holding them up.

3. Some would weigh him with a clean diaper on, zeroing out the scale, and some without. Certainly the weight from diaper to diaper changes a bit.

4. Some told me not to feed before a weight check and others never mentioned it.

5. There were lines and other monitors permanently removed from him each day so its not unrealistic that a gain could be offset by the removal of those.

I wonder how many babies have been sent home on fortified formula because weight gain was not supported under these conditions....BLOWS MY MIND! Luckily, Ty has managed to gain at every weigh in so far despite the differences...

As of Saturday Ty only has the PICC line, heart rate monitors, and a pulse Ox on his hand. We are almost there!

How can I help?

We have been blessed and overwhelmed by the amount of support from family and friends over the last few weeks, along with inquiries on how to help. Here are two ways:

1. An amazing family from our church group set up a meal train for us so that we can manage and organize drop offs all in one place! Here is the link for more info/sign up if interested in helping us with a meal:https://mealtrain.com/d4qel

2. We have been rather fortunate to have family members in St Louis that minimized our relocation expenses by providing housing and also care for Evan during our hospital stay. However, many of the families we met on our journey do not have that same fortune and we would like to help them in their time of need by providing children's books, meals, cards of encouragement, etc. We are allocating some of our own funds and setting up an account where donations will be accepted if you feel a calling to help. I will post this link separately once the account is live.

Please also keep praying for those families we met in the CICU, specifically for an extraordinary boy name Jackson and a sweet girl named Maddie. Both have touched our hearts and we continue to pray for them and their families daily.    

Doc, what part of breast feeding do you not understand?

When moved to step down, I was given permission to feed him as often as he was interested (YAY!) However they were still bolusing him breast milk through the NG tube every 3 hours and we were almost to full feed amounts...so when in the world would he be interested in nursing if he was full all the time?? And even if he did get hungry before the next bolus feed and I let him feed at breast, how would they adjust the bolus amount in order to avoid overfeeding him and causing tummy issues/reflux/vomiting? This "schedule" is not how a newborn feeds naturally and we certainly were not going to be feeding him by NG tube at home so shouldn't we be feeding him how we plan to at home?

This continued to be an uphill battle for two reasons...

1) The docs just wanted numbers and to measure exactly how much he was getting, which is not possible when breastfeeding. We initially tried to bottle feed him my milk, solely to get the docs their numbers and get us home sooner, but after trying twice Titus was clearly not interested and we weren't going to force it and then try to transition him to breast later.

2) Docs didn't want to remove the NG tube in case breastfeeding didn't work out and they would have to replace it. They also didn't want to stop bolus feeds because that was their way of knowing he was getting "enough".

This was so frustrating. As a mother who had successfully breastfed our first son for 13 months, it was clear to me that Titus had the tools and desire to feed if given the chance. He proved it in the NICU and also in CICU. He just wasn't being given a chance to show his full interest! (To be clear, I fully understand the doctors concerns, its a very real and legitimate issue with many heart babies...but sadly the system sets them up for that despite the few that could really thrive on breastmilk alone.) I knew that it was a possibility that breastfeeding could be challenging with Ty's condition, however my motherly instincts were telling me this was not the case and I was NOT about to give up!

Ultimately had Ty and I not taken things into our own hands and literally fought for breastfeeding it would have led to coming home with an NG tube. But Ty, by his own hands and with a small bit of assistance, decided that night that the NG tube was coming out...and from then on, he was eating like a champ!!!

Titus's first and last bottle....

Sleeping in peace with a full belly after pulling the NG tube out...

We're moving on up! I mean, down...

Friday 10/17/14:

We got news that we will be heading to step down today...and in hospital time, that means we got notice about 30 minutes before we were expected to move! Jake was taking care of Evan all day so that meant I had to quickly pack everything up and move it all by myself. Jake was not thrilled with this news since he wasn't there to help but we managed just fine and were thankful to be one step closer to going home.

In step down, your nurse pretty much leaves you be unless you need something, which is nice. Less interruptions, less noise, less tests, etc. I also no longer had to ask to hold Titus and was responsible for all his care, including baths, diaper changes, giving medications, etc. which is wonderful!

I knew the step down unit was our last stop before we would be discharged so I was initially thrilled to be there...however that enthusiasm quickly faded as we were placed in a smaller room than we had in the CICU and it was shared with another family. That experience was interesting to say the least. The patient was a teenage boy who insisted on watching horrible day time TV shows and I was trying to breastfeed which made for some awkward moments. Luckily, they were discharged a few hours later and no one else was scheduled to replace them, so Ty and I ended up getting the room to ourselves.

Big news of the day: His arterial line was removed and they completed his post surgery ECHO and EKG. At this point, all they are monitoring is his weight to make sure he is gaining before we can go home. And this is where, to my surprise, things started to get really challenging....

Ty and Papa

Its so nice to see him without any tape or accessories on his face!

Changing his incision and chest tube dressings....such a strong boy!

Progress!

Thursday 10/16/14

Cannula completely came off yesterday evening. After only a few hours they realized our little guy didn't need it and was doing well on room air alone!

The NG tube sadly was put back in but this was a compromise in order to be able to begin feeding fully today. The nurses were really pushing for oral feeds to start yesterday however the doctors weren't in agreement and insisted that Titus be completely off the Dex before oral feeds start in order to avoid the risk of aspiration. An incident like that could set us back quite a bit so I was okay with being more conservative with this especially since we had so much progress yesterday.

Today, Titus is now weaned completely off milrinone, epinephrine, and dexmedetomidine. They will keep the lines in for now, delivering an extremely low dose of heparin, along with some fluids, just in case he needs to go back on any meds. Titus has not yet needed any morphine for pain management. Its hard to believe that two days post open heart surgery all he is on is two small doses of Tylenol! What a champ!!

So here is what is left:

1. Pulse Oximeter: To monitor Oxygen levels in his tissues.

2. PICC line: the central access for all meds, antibiotics, TPN to be delivered.

3. Arterial Line: Monitors his blood pressure 

4. Heparin: Blood thinner that prevents clotting around the artificial tube they inserted in his heart. This will be weaned off before we go home and will be replaced with a daily aspirin.

5. Heart monitor leads: Monitors the heart rate.

6. Lasix: A more mild diuretic that he will go home on to prevent excess fluid build up.

7. NG tube: Should come out once feeds are established...I am still getting the run around on when that will be but for now they want to continue increasing the amount of breast milk he is receiving by 4mL every three hours until the goal feed of 70mL is reached.

The goal now is to continue monitoring overnight and possibly move to step down tomorrow (Friday)! Praise the Lord!

Our awesome nurse Nikki. She was aggressive in removing his meds and weaning him off oxygen (which turned out he didn't need at all!). She really advocated for us at a very critical time in his recovery and we couldn't thank her enough!

NG tube and pulse Ox are the only things left on his sweet face!

Daily check with the Pediatric Cardiologist.

Evan meeting his little brother for the first time!

Neighbors and friends

Since being here at Children's we've come in contact with many other parents and kiddos, each having their own unique and amazing story. We pray everyday for these children and their parents and we would ask that anyone reading this do the same. A couple things I know...God absolutely hears and answers prayer and performs miracles everyday.

- Jackson was in the room across from us when Titus was admitted to the NICU and I'll never forget his precious eyes staring back at me through his room window while I was anxiously waiting outside of Titus's room for the staff to get him settled in. The following day I got the pleasure of meeting Jackson's father and got the low down on his unbelievable story (see their blog: http://ourpaljackson.blogspot.com/). Mason and Rachel are Jackson's parents and they have been a wonderful source of encouragement and strength for us...all while handling a very challenging situation of their own. We are thankful for this family and honored to witness Jackson's story.

Please pray for Jackson, Rachel and Mason. The little ones in this hospital are fighters and Jackson is probably one of the toughest of all.

- Jake

Oh, give thanks to the LORD, for He is good!

I am caught up and actually posting on the day of, yay!! And today is a BRAND NEW day!

I got to the hospital at 7:30 this morning and met our new nurse who had Titus swaddled and comfy as a bug! It was immediate relief even though his breathing tube was still in...

Within just a few minutes of arriving we got news that they were going to stop the Fentanyl drip completely now AND remove the breathing tube!! PRAISE!!! He seems to have his pain managed by a combination of Dex and bolused Tylenol and if it seems that he is in any pain they will bolus morphine as needed.

Then a few minutes later, we got more good news! They will be taking the RA line, catheter, and both chest tubes out as well! HALLELUJAH!!!

Could they top this?? Oh yes, yes they could!! I get to hold my little man and he can get some milk in his belly if all his labs come back good this afternoon! Oh how empty my arms have felt the last couple days...so happy inside!

So the current list of what is still connected:

1. Milrinone: A vasodilator that assists with the contracting of the heart and prevents overworking the heart muscle by creating less resistance in the arteries (lowers BP).

2. Epinephrine: Assists with the squeeze of the heart muscle while he is recovering.

3. Dexmedetomidine: His new med for light sedation. This low dose keeps him calm so he doesnt pull any lines out, but it does not manage pain like Fentanyl so they have put him on tylenol for the moment and if it appears that he is in any pain, they will bolus morphine as needed. 

4. PICC line: the central access for all meds, antibiotics, TPN to be delivered.

5. Heparin: Blood thinner that prevents clotting around the artificial tube they inserted in his heart. This will be weaned off before we go home and will be replaced with a daily aspirin.

6. Ancef: An antibiotic given for 48 hours post surgery to prevent infection. 

7. Pepsid: To protect his gut while he is not getting feeds. This will continue until he is fully fed at breast. 

8. Heart monitor leads: Monitors the heart rate.

9. Tylenol: This is his pain management, much preferred to morphine.  We hope he continues to prove he is a strong little man and does not end up needing any morphine at all!

10. Bumex: Diuretic to get excess fluid out of his system.

11. Pulse Oximeter: Measures % delivery of oxygen to his tissues.

The team has been stopping by periodically throughout the day and has mentioned that they are going to start weaning the Epinephrine, Heparin, and Dex overnight. He is no longer going to get Ancef since it has been 48 hours since surgery and they are switching the diuretic from Bumex to Lasix. Once he is off all the meds and on his own, we can remove the arterial line from his leg and the PICC line from his chest!

Each line and medicine that is taken off means we are one step closer to being moved to the step down unit and then GOING HOME!

Thank the Lord for such a BIG and GLORIOUS day for Titus !!!

Last photo before removal of all the accessories...

Our nurse board in our room...we change the verse daily. 

Back in my arms, resting of course! 

This too shall pass.....

Tuesday 10/14/14:

Today was extremely difficult for all of us, and especially trying for me as a mother. Our whole situation is taking a toll on all of us, Evan has been acting out and is clearly a bit upset with us each time we visit...I completely understand why and hope he knows how much we miss him. We completely uprooted ourselves to St Louis and he went from spending every day since birth with me, to spending nearly 11 straight days without me.  I hope once we get home and back into our routine that he makes the transition easily. He handled several transitions well before; from breast to goats milk, from crib to full size bed, from home to preschool twice a week, and he seems to love babies lately. We are planning on spending more time with him each day as we hopefully get closer to heading home...hopefully that helps!

Even more difficult, here hospital side, they tried to wean Titus off the Fentanyl drip so they can get him breathing on his own. Fentanyl is a narcotic and suppresses the respiratory drive, leaving him unable to breathe on his own. We need to wean him off the drip in order to get him breathing on his own and get that blasted breathing tube out! However, the Fentanyl is also his pain medication, so in order to continue to manage his pain without the Fentanyl, they need to start him on Dexmedetomidine. Finding the perfect balance between these is a challenge as each baby responds different...they want to have him able to move and breathe on his own but be calm enough to not cause harm or allow too much movement that would hinder healing. In our case, Titus woke up too much the first time they weaned and he freaked out, thrashing his arms and arching his chest, his respiratory rate and heart rate escalated. They immediately had to sedate him again and tweak the measurements.

This scenario repeated itself several times through out the day which was SO SO SO hard to witness. Each time he would come to and open those sweet eyes, there was a bit of excitement and my heart melted for him...but shortly after, he would turn bright red and squint his eyes in a silent cry since the breathing tube prevents any noise from escaping. I tried to soothe him at his bedside, rubbing his head and patting his chest but it was so overwhelming. It was awful to stomach...my innocent Titus lying there helpless, in pain, unable to be soothed or comforted, while they calmly try to figure this out. I grabbed our bible and read outloud, prayed and prayed, cried and cried several times through the day....A day I was so looking forward to in terms of celebrating the beginning of his recovery had turned into one of the hardest days yet. I was drained emotionally, physically, spiritually....I got angry with God and my heart was hurting.

 Jake could clearly see my struggle and graciously offered to stay with him and comfort him while I showered and got some rest with Evan that night. It was so hard to walk away, but it just what I needed...Jake has been my rock and I cannot imagine having done this without him...he stays strong and reminds me to keep my eye on the prize--getting everyone back home!

Psalm 119:114-115

You are my refuge and my shield; I have put my hope in your word. 

A little bit of this, a little bit of that....

Monday 10/13/2014:

Once we were allowed back in Titus's room, the doctors and nurses went over every line and medicine that he was hooked to....

1. Milrinone: A vasodilator that assists with the contracting of the heart and prevents overworking the heart muscle by creating less resistance in the arteries.

2. Epinephrine: Assists with the squeeze of the heart muscle while he is recovering.

3. Foley Catheter: Allows his team to monitor his urine output as he will have excess fluid to lose in the next couple days. His output will actually determine when they pull him off the breathing tube as they do not want excess fluid and swelling to close his trachea when the tube is removed.

4. Fentanyl: Sedative pain medicine so that he does not feel anything and cannot move.

5. PICC line: the central access for all meds, antibiotics, TPN to be delivered.

6. Heparin: Blood thinner that prevents clotting around the artificial tube they inserted in his heart. This will be weaned off before we go home and will be replaced with a daily aspirin.

7. UAC Line: This is his umbilical line that monitors his blood pressure. It has been in for 8 days now so they will likely remove it tomorrow.

8. Ancef: An antibiotic to prevent infection.

9. Pepsid: To protect his gut while he is not getting feeds.

10. Two chest tubes: For draining excess fluid around the heart. The goal is to have these removed within a couple days.

11. Breathing tube: Self explanatory. This is how he is breathing for the first 24-48 hours.

12. NG Tube: He is not going to get feeds for at least 48 hours post surgery so this is placed for the time being to allow any extra air to escape his gut. Eventually, he may get feeds through the tube, but it depends on when they remove the breathing tube. The goal is to get him to breast 6 hours after the tube is out but some babies have trouble with feeding after the breathing tube is removed since it can irritate the throat and cause swelling. We have high hopes for him getting back on breast and never looking back.

13. RA line: A line that goes directly to his heart to monitor the pressure in his right atrium.

14. Heart monitor leads: Monitors the heart rate.

The goal over the next 24 hours is to keep him comfy and sedated to allow recovery. He will be closely monitored and then reassessed several times a day to determine what adjustments can be made and what can be removed....every line that comes off is one step closer to home!!!

Time for Surgery!

Monday 10/13/14

We got news late last night that we will be moved to second case of the day so surgery will be moved to later in the morning depending on how long the first case takes. It was a bit startling, but we figured the upside is that it will give us more time to squeeze him! It also allowed us to get to know our nurse for the day and she brought great peace to our morning when we heard her singing to the songs we had playing on the christian radio station in our room. God was with all of us that morning.

4:00 AM Titus had his last blood draws for pre-surgery labs and also got his pre-surgery bath with chloro-hexadine.

8:00 AM They surprised us with news that the surgeon was requesting Ty have a PICC line placed before the surgery. This will allow a centrally located intravenous access for a long period of time to deliver TPN, meds, antibiotics, etc. It took over an hour for them to place it which sadly ate up quite a bit of our snuggle time BUT as soon as they were done I scooped Titus up and held him for about an hour or so until the transport team arrived and we walked with him to the OR.

11:10 AM We walked Titus to the double doors, said a prayer over him, and then entered our private waiting room to wait for hourly updates.

12:07 PM Got a call from the OR nurse that Ty was fully prepped and surgery would begin in a few minutes. More prayers....

1:00 PM Fire alarms went off on our floor. Talk about freaking a momma out!! There was a small fire somewhere else on our floor and it was put out quickly.

2:37 PM Got the call that Titus is off of the bypass machine and they are double checking for bleeding before sewing his chest up.(!) This is great news as some babies cannot have their chest sewn up for a couple days due to swelling...he apparently has tolerated everything very well.

3:10 PM He is sewn up and now headed back to the CICU to get settled in. HALLELUJAH! Praise the Lord!

3:32 The surgeon came in and told us that the surgery went very well. He was actually very casual about it, talking as if he had just went in and replaced an exhaust pipe on a car or something! He mentioned that Titus went on bypass just fine, they took a look at the anatomy of the heart and as the CT scan showed there were no surprises. They cut his PDA out and placed the gore-tex tube between his aorta and pulmonary arteries. They also took a good look at the pulmonary arteries while in there as well and determined that right artery was large enough but the left one needed to be widened for adequate blood flow to his lungs. So they patched it by cutting it open and then sealing it with a donated human artery that will allow growth over time.We sat there hearing the news and waited for the BUT...but it never came! We could not have asked for a smoother surgery and are very grateful for the team taking care of Titus.

4:00 We headed back to the CICU waiting room and anxiously waited for the staff to give us the okay to see our little man. We actually were lucky enough to sneak a peek at him as they were bringing him back down the hall...just perfect timing!

5:37 Ty was fully set up in his room and we were finally allowed to go in...

This was actually where I thought tears, emotions, sadness, confusion, etc. would overcome me as a mom...however I was pleasantly surprised to not shed a single tear...While pregnant I spent a lot of time on blogs and FB pages of other heart babies to educate myself as well as desensitize myself to what we would be facing. I am very glad that I did because it was not easy to see him after surgery, but honestly, we had prepared ourselves for much worse so this was a relief! We actually smiled and rejoiced at how good he looked considering what he just endured. God has an amazing way of comforting us in times when peace is far from being found on our own....

WARNING: If you are sensitive, you may want to skip the photos below....

Lots of monitoring....

Swelling from surgery and excess fluids...very normal and we expected worse.

Fully sedated and paralyzed so he doesn't rip off any lines.

They will keep him fully sedated and closely monitored overnight and if he is stable, then they will see how he tolerates a couple adjustments....prayers for a quick and uneventful recovery!

Prep and Prayer

Saturday 10/11 & Sunday 10/12:

We snuggled Titus as much as possible and prayed that he stay strong for surgery Monday. We had a couple visitors; Jake's sister, dad, mom, my mom, and a good friend from our church, along with his daughter. It was so nice to have everyone's support and well wishes!

We were surprised to get moved out of NICU and up to CICU on Sunday morning. We were excited to get there but it was also a bit stressful since we had gotten used to the NICU and the staff over the last several days; and they were used to us by now too! Even though it was another adjustment period for us, it was great that the staff got the opportunity to know Titus before his surgery...they often get babies last minute and then see them at their worst. Additionally, the CICU nursing staff here is top notch...I feel way more comfortable leaving for a bit to shower, eat, etc.

The nurses explained what we can expect tomorrow; he will have labs first thing in the morning and will receive two chloro-hexadine baths before surgery. They will let us snuggle one last time and then he will head to get prepped for the OR. Once we get to the double doors, we say our goodbyes and then will see him 5-6 hours later so long as everything goes well. Other than prayer, I am not sure how a parent prepares themselves for this time...

We received an abundance of calls and emails today, We cannot express how meaningful all the prayers are to us...to those who have prayed for us and also with us over the phone, we are forever grateful. We were able to catch up on some sleep thanks to the peace those prayers delivered us.... We are still WAY short in the sleep department, only leaving Ty's room for a handful of hours each day total but we also know that between a newborn and toddler, we are going to be dead tired in the coming weeks once we return home anyway!

Tomorrow is the big day Titus, get your rest!!!

Can you guys turn these machines off? 

I sure am going to miss his warm body snuggles for a few days....

Surgery?! Tomorrow?! 

Boring days in the NICU are GREAT days!

Thursday 10/9:

We are extremely thankful for another calm and uneventful day. Titus is going strong without the cannula and since he is stable and his SATS and labs are coming back great, they are even letting us begin to nuzzle twice a day after I pump. Even though I would still prefer to be fully breastfeeding, at least this way he is able to practice feeding. The more we are able to nuzzle, the more skin to skin time, the more breast milk I will make, the more he will be comforted and the more ingrained breastfeeding will be when he is ready. He of course gets a little bit of milk every time we nuzzle since it is nearly impossible to empty the breast completely but its headed the right direction and I am more than happy that the staff is trusting me enough to grant us that time.

We also heard that it is possible we could be headed to surgery tomorrow...we are waiting anxiously for the call.

Praise the Lord for a peaceful day of snuggling with our big guy...


Friday 10/10:

We got word that will not be able to squeeze him in for surgery before the weekend BUT he did get the first case slot on Monday morning at 7:30 am. Hallelujah! While it seems strange to celebrate surgery being scheduled, we also know that it is a necessary step to get Titus home and to the next step of actually fixing his heart.

We met with the surgeon that will perform the shunt procedure, Dr. Manning, and went over the CT scan/3D images of his heart in more detail, along with the plan for Monday morning. He spent about an hour with us explaining the anatomy of his heart vs a normal heart and then went into any worries that he has based on all the info they have pre-surgery as well as the risks.

He mentioned:

1: They plan on doing a central shunt (still a BT shunt but placed a bit different based on his unique anatomy). The shunt is an artificial tube that will attach his aorta to his pulmonary artery and allow blood flow to his lungs.

2. His CT scan revealed what they think is a bit of narrowing in his pulmonary arteries so he will possibly widen and patch those based on how they look once they have him open. The concern is that the narrowing may cause insufficient blood flow to the lungs once the shunt is placed. They do not want to send us home and risk needing us back for surgery just to widen those so they are going to make sure they are sufficient size while he is open.

We signed the consent form allowing them to move forward and do any procedures deemed necessary at the time. It was quite the form but we were happy to be moving in the right direction. We plan on cuddling all weekend because once he is admitted to surgery we will not be able to hold him for several days.

The set up of Titus in the NICU...this is minimal believe it or not!

Sleepy sleepy sleepy....

A new day...

Wednesday 10/8:

We were able to get a few hours of rest and were looking forward to a new day....

Titus's labs overnight and in the morning continued to come back completely within acceptable ranges. They decided to space his blood draws out to every 8 hours instead of 4 now which is great news! They also have mentioned possibly taking him off the room air that is being delivered through the cannula on his face. He hates having it taped up to his nose and is constantly scratching and pulling on it...to be honest when it slipped off I never worried about putting it back in too much because nothing was changing.  They are going to start delivering nutrition through his IV today as well and also mentioned that if he remained stable, they would consider letting us nuzzle at breast again, which is GREAT! He has not forgot about the boob since he had it that first day of life and he is constantly rooting.

Titus's cardiology team also met today and went over all the tests and the new ECHO in order to get a game plan together. They sat us down and confirmed the  plan is still to place a shunt in his PDA to keep it open and continue delivery of blood to his lungs but they will also be patching a few pulmonary branches in order to ensure adequate blood flow to his lungs. We will be meeting with the surgeon before the surgery and they are hoping to get us scheduled ASAP since Ty is plenty healthy and ready! Unfortunately, CICU is currently at full capacity so we remain on standby until a bed opens.

I also got to see Evan for the first time since leaving for the hospital on Sunday evening. It was a short visit with many joyful tears on my end but it was so refreshing. I miss him SO SO much!

Overall, today was an awesome day. It was so nice to have less people poking and prodding as well as no beeping or alarms going off! We are giving thanks to the Lord for such a positive day and we are hopeful to get into surgery before the weekend, for the cannula to come off, and for things to continue to be as stable and quiet around here...