Happy First Birthday Titus!!!!! (12 days late!)

Titus,

God breathed you into our life as part of His perfect plan. We feared the unknown but never gave up hope. We cried. We prayed. We surrendered. We rejoiced.

You brighten every day and display your strength proudly. You make petty the things that we would normally be consumed by. You are a daily reminder for us to bring our focus back to Him. God has big plans for you, and I cannot wait for Him to reveal them! Happy First Birthday my warrior.

Pray. Believe. Receive. TEAM TITUS!  

https://animoto.com/play/s4R1Twi08TsG1oXuqsAuow

Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations 

Jeremiah 1:5

Birthday Countdown.....

It has been 4 months since our last update on Titus. We are not as disciplined as we'd like when it comes to this blog but we have been working on some projects and managing two small children so I cut myself some slack! I also know most of you keep up with us on Facebook, so I suppose I feel less urgency in updating the blog.

Titus is now seen by Cardiology every three months. Last check, they just asked how he was doing, had a listen to his heart and then sent us on our way! I am pretty sure T would not have let them do an Echo even if they had tried. We were so grateful to hear the words, "Well, now just treat him like a normal baby. Let him do the normal baby stuff." Praise the Lord! It was both scary and liberating. He is still on aspirin daily and likely will take it indefinitely but we have come far!

As we get closer to his first birthday I am a mixed bag of emotions.... he is crossing into toddler-hood and becoming a little person. He is a very confident dude, has a huge heart for people, loves sharing and laughing, reading books, and throwing things to see what they do. He seems to be rather skilled in the motor development of his hands and I find him concentrating very hard on placing items perfectly or putting things in small places. He often spends his days both defending himself from and trying to keep up with big brother Evan, which will probably never end. He is slowly building a preference for Jake sometimes, which is kind of nice considering T is almost 25 lbs by now and my hips could use the break. 

Freestanding!

He has spent the last few weeks freestanding and cruising, so his first steps will be any day now. I joke that it will happen when my dad flies in from Hawaii to visit in October. He witnessed Evans first steps with us while here for Christmas break a couple years ago. We shall see!   

Visiting Grandpa Bruce in Hawaii

Congenital Heart Night at Busch Stadium

We are so excited and feel overwhelmingly blessed to be celebrating his 1st birthday in just one short week. We will definitely update with photos of the occasion. 

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St Louis Heart Walk Team Titus!

We participated in the Heart Walk at Busch Stadium in St Louis last weekend, such a wonderful event! It was great to see other supporters and rally for not only heart health but Congenital Heart Defect awareness as well.  I designed some Team Titus T-shirts to raise funds and together we were able to raise over $555 for the American Heart Association! Our families and friends have been so supportive in this journey and we look forward to seeing what other opportunities await us to raise CHD awareness and help other families affected by heart disease. Thank you all!!

We have until June 1st to continue getting donations. We also have 4 large basic Team Titus T-shirts that were donated to us by Fast Yeti who helped me design them. We would like to offer the t-shirts to the fist four people to donate before June 1st via our team page:

 http://heartwalk.kintera.org/metrostlouis/teamtitus1 

Below are photos from the walk....thank you again to all who supported Titus!

6 Weeks Post Op and Rocking it!

We are 6 weeks post Titus's Glenn operation now, and he is doing so great! He had his last post-op cardiology appointment today and we will not be going back for 3 MONTHS! We will continue to give him a half a low dose aspirin per day but otherwise just let him be a baby and do normal things...gosh what a miraculous thing!

Titus is now just over 7 months old, can sit up very well on his own, and has started to make his move to crawling. He has been drooling and gnawing like a dog on anything he can get his hands on. I can feel both bottom teeth ready to surface any day now. He also started grabbing at everything on our plates and smacking his lips together, so we tried to introduce banana, oatmeal, and sweet potato, but he just is not ready. He gags and chokes until red in the face. I am not too worried about it at this point, Evan was not ready for food until closer to 8.5 months either. However, I have to keep in mind that Titus's journey has been different and that many times heart kids develop scarring from intubation and we definitely want to be proactive in recognizing any special needs he may have in the coming months. We will keep trying foods for fun from time to time and if things do not improve by 9-10 months we will call on a therapist to see if anything was damaged from his 3 intubations.

Even though our next appointment is not for another 3 months, I will be updating the blog regularly! Now that things are settling down a bit, we hope to be more active in finding ways to help other heart families locally. If you know of another family facing these challenges that could use some extra support, please send them our way!

Titus at the Cardiologist office waiting for his last post-op appointment...He is such a social butterfly already, bringing so much happiness and light to all he meets with his larger than life smile....

 

Sorry to leave you hanging!!!

As most of you know, we were discharged and headed home the morning of March 28th! Yes, you read that correctly...4 DAYS!! Exactly 96 hours after after Titus's open heart surgery, Titus was at home chuckling away in his jumper! The entire floor was surprised with his speedy and rather uneventful recovery. God is so so GOOD!!!

 Leaving the Hospital

I apologize to anyone following us that is not also on Facebook and may have been hanging in suspense. Despite good intentions is it so difficult to remain faithful to completing this blog, even on just a weekly basis. Spring has been in full swing and with two under the age of two, time is so hard to find and so valuable! I find myself grabbing my pillow at night rather than the computer...nothing beats a good nights rest when you need endless energy to keep up with the daily demands of these two goofballs. But ya know, I wouldn't have it any other way. I wouldn't trade either one for a billion dollars...but I wouldn't give you a dime for another one right now either!

He can almost sit up alone like big brother...

Titus has been doing so well since coming home. He is red cheeked, alert, eating/sleeping great....all the things we were hoping for. He was sent home on 1/2 an aspirin a day and lasix (a diuretic to help him rid of excess fluid) which will continue for about 4-6 weeks. We had our two week post surgery follow up with the cardiologist as well. It was complete with ECHO and EKG and let me tell you, Titus didn't want anything to do with it. It seems he is confident with his repair and doesn't see the need for anymore snooping around!

Easter 2015

Enjoying the sunshine!

His surgery set him back a couple ounces but I have no doubt he will bounce right back. And relative to other heart babies, that is a drop in the bucket for him and we are so thankful for that God given cushion! His incision is also healing nicely. We are in week 4 of recovery and it looks great...no sign of infection and no raised areas like last time around. We will continue to pray for full healing and health for this little guy....thank you all for the prayers and patience in this update!

 

His incision after 3 weeks, when all the steri strips fell off.

We will be treating his scar with some essential oils once we reach the 6 week mark. I am excited to see what they can do for his scarring. We use them daily, even when we were in the hospital with Ty, but I have yet to use them for scarring like this! 

Psalm 150:6

Let everything that has breath praise the Lord.

Thursday 3/26

Today was a new day...Titus woke up bright eyed and bushy tailed at 4am! He even let out a few smiles despite still refusing to take the bottle. He can be a stubborn little guy!

Around 8:30am they removed his chest tubes and RA leads that were placed in his heart. This required 2 doses of morphine for pain relief, so he unfortunately went back to a less energetic state pretty quickly but this paved the way for him to be held and nursed. Yay! They quickly removed his IV from his arm as well, leaving just the one IV in his foot (he kicked the other one out last night) just in case they need to administer any meds or fluids later. Now that he has only heart rate and resp rate leads on and is off all meds, they wrote the orders for us to move to the step down unit as soon as the chest xray checks out. Whoohoo!

Titus quickly took to nursing and all looked to be going smoothly, until he spit up...pretty much everything he ate. This happened right after he received his daily dose of lasix (an oral diuretic he will go home on) so we figured maybe he just didn't like the lasix flavor much. It is very uncharacteristic for him as he never has had reflux or any spit up issues. But then he ate again later, and puked a good amount of that up too. No bueno.

His team stopped in and checked his belly out. They think that all the pain medicines he has been on the last two days essentially led to an Ileus, or extreme slow down of his intestinal track. Each feed was contributing to more distension and stomach pain. So for now, even though from a clinical stand point we do not need to be in the CICU they are going to keep us overnight and move us to step down in the morning sometime. Unfortunately since Ty isn't allowed to eat any longer he has to be put back on fluids. And of course Titus kicked his last good IV out and so they had to place a new one...he is such a booger.

Prayers that Titus just needs a bit more time and it is not a larger underlying issue...he is resting a lot today so hopefully that helps and he wakes up ready to go!

Wednesday 3/25

The nurses and doctors said it was a good night, but I could most definitely beg to differ! They had some challenges in managing his pain. It seemed like they would up dosages or frequency of morphine, toradol, and tylenol without much effect and we did not want to up the dosage of Dexmedetomidine since that is the anesthetic keeping him drowsy and lowering his heart rate and respiratory rate. Dex is a narcotic and so we want to wean that ASAP...its also keeping him so drowsy that he had no interest in eating overnight.

He is doing much better this morning (Wednesday). Its actually been 5 hours since his last morphine dose, which is a huge improvement over last nights hourly episodes requiring more doses. Praise! He also got to put some food in his belly and took 150ml of milk from the bottle. I was so relieved to see that. I was so worried he would not take the bottle and we would be left with a grumpy baby until the staff decided breast was okay. They wont let him go to breast until they monitor a couple ins and outs to make sure things are working okay. Unfortunately, we tried another bottle, and then another and he will not take anymore. We will see how long he goes (and how long my patience lasts!) before morning when he can go to breast!

Prayers for God to continue watching over Ty, keeping him comfortable and safe would be greatly appreciated!

Surgery Update 2

Titus's Glenn procedure went great! They did not need to put him on bypass, as Dr Manning had suspected would be the case, he was able to complete the entire procedure without it! And he was extubated in the OR, Praise the Lord!!! He is understandably grumpy, waking up and moaning a lot....it's heart wrenching but they say it is more from the anesthesia wearing off than anything pain associated at this point. The biggest hurdle is pain management right now. They have to find that perfect balance of pain medicine; they want him to remain sleepy enough to be calm and not pull lines, but awake enough to eat. This was one of the hardest parts of the recovery last time and is looking to be a battle this time too. One of the temporary side effects of the Glenn is that he will have major headaches until his body adjusts to the new pressures, thus the need to stay on top of his pain management. But I think he looks and is overall doing fantastic given his circumstances...Thank you all for the prayers! 

Titus 's lines:

1. Heparin--blood thinner until aspirin can be given on Thursday

2. Dexmedetomidine drip--anesthesia

3. Foley Catheter--to measure urine output

4. Heart rate leads

5. Respiratory rate leads

6. Chest tubes--to allow draining of any fluid around the heart

7. 2 IV lines-- for meds/blood/fluids

8. Peripheral line--Another safe access point for meds/blood/fluids

9. Nasal Cannula--carries extra oxygen until he is fully awake

The goal is to have only Heparin, heart rate leads, respiratory rate leads, and IV lines in tomorrow AND move out of CICU and down to a step down unit. PRAYERS and PRAISE! 

Surgery Day Update 1

6:30am  It poured heavy rain on the way to the hospital for Titus's surgery this morning. He wasn't allowed to eat since 2am so of course he was a bit unhappy about that! Jake and the same day surgery nurse were able to keep him busy with bubbles and pre-surgery checks. We had several nurses and staff stop in to see him before he went back, who can blame them with this face?!

Titus in his hospital gown watching the nurse blow bubbles

7:35am  I have to say, I have been anxiously and almost impatiently waiting for this day for quite some time. But now that it is here, I just want more time and cuddles with him. I feel like it just completely snuck up on me, and all the emotions, don't get me started. I cannot tell you how many time we have heard "the plan" for Titus, but the last time you know you are going to hear it, all the sudden your mind is racing with all the "what ifs", what does this mean, that mean? Risks all the sudden seem more pronounced. Its stomach aching. No one should have to hand their baby over....but we must. And we did with many tears. Not tears of fear or doubt, but tears of sadness that he has to endure this and of faith and joy that he will be in a better position once he recovers. 

8:00am  He is getting prepped now and we are anxiously waiting in a private family room, listening for the call that they are going to begin the surgery. Prayers. Many Prayers. 

Being confident of this, that he who began a good work in you will carry it on to completion...-Phillippians 1:6.

Ready for Surgery!

Here is the 3D printed model of Titus's heart! Doctors used his ECHO, cath procedure measurements, and MRI information to print this 3D model. Then they met in conference on 3/4/15 and put a plan together!

The purple is the right side of his heart & the pink is the left. The valves are white & aorta is red. 

The team decided unanimously that Titus is not a good candidate for the 2 ventricle repair and will undergo the Glenn operation. While we were hoping and praying for the 2 ventricle, this was not necessarily bad news; and we are certainly grateful to even have options and access to such great medical care! The main issue with Titus's anatomy is the location of the hole and his right valve. It almost straddles the hole and the valve "strings" attach to the tip of the VSD. Right now, the valve functions perfectly and for them to close the hole they would have to baffle through that valve, risking stress or damage to a perfectly good valve. Ultimately, its better to have a strong 3 chamber circulation than a potentially weak 4 ventricle that could worsen over time.

The Glenn is a fairly easy procedure, Dr. Manning (Ty's heart surgeon) has lots of experience with this procedure, recovery is fairly quick and it will last him until he is 3-6 years old. Undergoing the Glenn also does not mean that his next step is the Fontan procedure. They are hoping in time, with more developments in the field and with Titus's growth, that they may be able to make him a 2 ventricle by that time.

Glenn Procedure

1. The lower section of the pulmonary artery (with stenosis) that should carry oxygen-poor blood into the heart is removed.
2. Oxygen-poor blood coming back from the top half of the body is diverted directly into the lungs instead of flowing back into the heart before going to the lungs.

***We appreciate everyone praying for Titus and we graciously ask for continued prayer in the coming weeks during his surgery and recovery. The recovery stage will be particularly challenging this time since he is so active and will have restrictions he will surely oppose!

Cheese! 

Evan wanted to help feed Titus so we let him give him a bottle. Titus just chewed on it :) 

Great Grandpa Ellerman and Titus. I would say Ty takes after this side of my family!

Evan and Ty love playing together. I cannot imagine 6 months from now!

Check out this video link featuring Titus's surgeon in St. Louis!

Titus's very own 3D model of his heart is being printed this week and Dr. Manning and his team will decide which surgery he will undergo at their conference next Wednesday. We will be praying for wisdom and a clear, unified decision!


http://www.ksdk.com/story/news/health/2015/02/26/3d-model-helps-doctors-during-toddlers-heart-surgery/24039449/

Waiting and Wishing

Latest Updates:

1. Titus's team met on Wednesday January 28th and discussed Titus's latest echo and his physical profile. They also included a surgical team from Boston Children's Hospital who will serve as our second opinion since they seem to not have a clear picture of which surgical fix for Titus will be best. Dr. Manning, the lead surgeon for Titus's case, is leaning toward the 2 stage Glenn/Fontan route due to the location of his valves and the distance the aorta is from its "normal" location. However Boston requested more information before they could state their recommendation. They have requested a sedated MRI, Echo, and Cath procedure (where they can measure pressures, measure distance and relation, and inject dye into the circulation to create images). They will use the data from these three procedures to print a 3D version of Titus's heart...I wonder if we will get to see or keep it?!? We will head to St Louis this week to have those completed.

These procedures are fairly routine, however the cath is invasive so it does carry a certain degree of risk AND he will also be sedated which comes with its own set of risks. Prayers for an uneventful visit that gets them all the information they need is greatly appreciated! We also hope they can meet next Wednesday and come to a unified decision on what they feel is going to be best for Titus.

Everyone has been hopeful for the two ventricle repair to be possible, and it is likely we could find a surgeon willing to do it, but if it isn't going to be a good two ventricle repair than he is no better off. We would much rather have a good single ventricle circulation (which we already know he is a great candidate for) than have a leaky or potentially weak 2 ventricle repair.

In the meantime, Titus has been growing like a weed, rolling over like crazy, smiling, giggling, grabbing for everything in site, he is such a ham! He is now over 17lbs but has definitely slowed down a bit. The slow down is probably due to being so close to needing surgery, but also because we had a couple unexpected hiccups. As if things couldn't get more exciting around here, I had an emergency appendectomy on Thursday. Until they were able to schedule surgery I could not eat or drink and it was well over 24 hours...that hit my milk supply hard and then adding in the stress of the surgery and recovery and we had a couple challenging days where he was not getting what he needed. He still is refusing a bottle so he just waited it out! Its been extremely challenging at times since I cannot take pain medication while breastfeeding too, I think he sometimes picks up on my discomfort while he is laying on my belly nursing. Thank goodness for the Lords ability to heal and comfort....

Evan & Titus PJ Party

Found his feet!

A couple hours post-op snuggling the boys!

January

Is it just me or has it been quiet on this blog lately?

Thankfully, there just hasn't been anything new to report! We enjoyed a bit of normalcy and time together through the holidays. It was a tough decision but we decided to stay home this year instead of traveling to all our families Christmas dinners. It was our first Christmas in our new house, with Evan able to open gifts, and our first Christmas with Ty. Plus the flu seems to be hitting hard this year and this mama isn't taking any chances. We hosted a small dinner and enjoyed a short but sweet visit from my dad. Since he lives in Hawaii, it was his first time meeting Titus! It was a great break from the daily grind and gave us some much needed time together as a family.

Praise...Our little guy is tipping the scales at 15lb 11oz as of Friday January 16th! He impresses all the doctors and nurses with his awesome fat rolls and giggles...Today he is 3 1/2 months old and his personality is really starting to shine through. He smiles, coos, kicks, has began to roll side to side, can grasp objects, sit in the bumbo, and has great head control. He is very much still attached to mama and I am equally attached to him. I thought maybe with a second child I would be a bit more carefree or relaxed about things but then I also knew with his heart that I would probably step worry up to a whole new level! Praise the Lord for his comforting hand through all of this...I see Him working everyday in our family and Titus.

Prayers....In the last month Titus' SATS have just dropped below 80. He has began to have "blue spells" where his hands, feet, and upper/lower lips will turn blue and dusky. His nail beds have always been quite purple but this is a new degree of purple/blue and further indicates he is nearing his time for surgery. Even though I knew it would happen, it was still very scary to see him that color! He is such a strong boy though and it doesn't seem to phase him one bit!

We had our routine biweekly cardiology appointment on Friday and despite his oxygen levels running 77-79 at home lately, they were only able to catch a 76. The doctor ordered a complete ECHO to send to St. Louis so they can start looking at surgical options for Titus. They will meet this Wednesday or next Wednesday, depending on their caseload, and then we will meet again January 30th to go over what the surgeon thinks is the best procedure to "fix" Titus's heart.

Prayers please that the doctors see what they need to in order to make a sound decision in the best interest of Titus's health for the long term!

Titus with Grandpa

Family Christmas Photo

Brothers

Titus concentrating on grabbing his lion teether

Titus Blue spell (purple hand)

Its hard to capture on photos but you can see the green/grey around the mouth and blue eyelids...

Getting his ECHO and EKG