Sunday, June 12, 2016

Titus' Birth Story Pt 3: Finding Out the Design

The earliest we could get into the cardiologist was Monday, the 16th. We were scheduled to fly back with Paul that afternoon. We had packed everything up and moved out of the apartment where we had been living for the last 3+ weeks.
 The heart hospital is located behind a wall with several other medical facilities. When we arrived there were families everywhere with sick children, coming for treatment. Honestly it was overwhelming. I didn't expect there to be so many children. How did we get here. I felt like I blinked and we went from looking forward to the arrival of our perfectly healthy baby to now we are in this strange place filled with sadness. We didn't belong there. Our baby was fat and healthy. I wanted to get the test, be told everything was fine and leave!
Checking into the heart clinic
       As Jimmy and I were sitting in the hallway waiting to go in for Titus’ echocardiogram, a stranger came up to us. I immediately thought he was going to ask us for money, but as I listened to his words, I started to cry. He said that before we went in he needed to share Romans 5:1-5 with us. Then he read it right there on the spot. There were so many hurting people around us. I never expected for God to send someone to reach out to us that day. I read the passage in English on my phone several times after he walked away. At that point I knew something was going to happen and I was going to need these words. God was preparing us for something.

Soon after, they called my name. We went inside a little dark room and I laid Titus on the table and took off his little polo shirt. When Titus' heart popped on the screen I saw it pulsating really fast. Then I saw the number 275. The letters were so tiny on the screen that I couldn't read them. The tech was completely silent. I said, “Jimmy that’s not his heart rate is it?” Then the number went to 300. (It should be down around 120-160) The tech still wouldn’t say anything. Then he rushed out of the room.

 The tech soon returned with 2 doctors. One was the boss of the heart hospital and the other was Dr. Herrera, the cardiologist we had come to see. They started to explain to us why this was dangerous. They were very clear, making sure we understood the urgency, yet very kind to focus on the big positive that his heart was structurally perfect. We then went for an ECG and then Titus was immediately admitted into the NICU. There he was given Amiodarone through an IV to shock his heart back into a slower rhythm. Then he was started on Propranolol to keep it there.

 I am so thankful that God had us there that day. That is the only hospital in Guatemala that has the medicine needed to shock his heart back into the right rhythm. I'm thankful that he was having tachycardia during the few moments they were looking at his heart. Tachycardia can come and go. It hadn’t showed up in the other NICU and if we had missed it, he could have died in Petén without us knowing any better. God protected our little boy!
Titus spent the next 2 days being observed in the NICU, to make sure the Propranolol would regulate his heart. It went back up after the first day, so he received another dose of the Amiodarone and then they upped the dosage of the Propranolol. That time it worked.

I was so thankful for UNICAR (Unidad de Cirugía Cardiovascular), the heart hospital where we were at. It was started by a Guatemalan doctor in the 70's and many hospitals in the States have donated equipment and training over time. The equipment in the children's ICU was specifically donated by the Ronald McDonald House. They also built a beautiful waiting room, where I slept for 2 days. We were paying, but most children are treated for free. We even met a family from Honduras who traveled to Guatemala just for this hospital. The care in this ICU and from DR. Herrera is excellent.
What Guatemala always provides is a big dose of perspective. After spending 2 days and nights with the mothers in that waiting room, I was thankful for what Titus' issues were compared to what the other children/mothers were facing. One of the mothers had been sleeping in that waiting room for over a month. Her daughter had received 3 surgeries and now had an infection. She was 6 months pregnant. I tell you, these ladies were some of the bravest people I have ever met. We laughed and cried together. That first night, before we turned off the lights, we all prayed together for our kiddos. I am so thankful for their sweet spirits and am still praying for their kiddos.
Jimmy kept bringing us goodies to eat! Dads were not allowed to stay past 6PM. With each nurse or doctor that came around the corner, we hoped/feared news of our little one or the chance to go and see them. Titus was so exhausted from his heart working so hard, that he barely opened his eyes at that point. It was hard to get him to eat. I was so happy each time they called me to go in. He would grunt like he was hungry, but then only nurse for about 2 minutes, we made it through though. This NICU was very supportive of mothers being with their babies. Incidentally Titus' right ventricle was slightly enlarged, but it repaired itself once his heart started beating normally for a couple days.
Titus in a regular room being monitored
All the mommies were hoping to get bumped up to a regular room upstairs, because that meant our babies were improving. The 3rd day, Titus got bumped up! While I was there all but 3 of the 10 families I met got bumped up. Upstairs is not as nice. Titus was to be observed (mainly by his mother) for another 24 hours. There is a big difference between those 2 floors. That's all I'm going to say about that.
Before Titus was discharged he had another ECG. At that point Dr. Herrera diagnosed him with Wolff Parkinson White Syndrome. Titus was born with 1 or 2 (based on the ECG's) extra electrical pathways in his heart. 
His last ECG
My musical dad describes Titus as being in cut time while the rest of us are in common time. Jimmy says he runs on 220. If WPW presents itself when you are an infant, it is possible for those pathways to snap as you grow, resolving the problem. Adults/older children with this syndrome learn how to shock themselves back into a regular rhythm when they sense they are too high, with a vagal maneuver. Once Titus is big enough (around 5 years old maybe) he can have a heart cath where they go in and attempt to burn or freeze the extra paths. Everything is dependent upon the severity and also how well you respond to meds.

We were able to fly back to Petén on my 36th birthday!

At that point he was receiving the Propranolol every 8 hours. 12 days later he started going up to 280 again about 6 hours into his meds each time. Dr. Herrera is wonderful and responded right away to Jimmy's texts. The vagal meneuvers we use are holding him upside down for 20 seconds or holding a frozen gel pack to his face for 20 seconds. About 45 min in, the upside down maneuver worked both times he had a breakthrough.
Checking his heart rate
We ended up flying back to Guatemala City. Jimmy's mom extended her trip (because she is that nice) a couple days and stayed with the kiddos in Petén (where she went without power and water most of the time). Titus was started on a new med in addition to the Propranolol, Propafenona. I'm thankful for the machines that were given to us where we can monitor him to know exactly where he is at. This allowed us to not have to admit him to the hospital again. We kept him hooked up all night long in the hotel. Once he responded well for 24 hrs to the new meds, we were able to return to Petén. We got to fly back with my mom who is spending the next month with us! Our moms take such good care of us and we appreciate our dads who are willing to rough it for a month+ without them!
On the way to go get Kiki from the airport
Titus meeting his Grandma Kiki!
 As he grows, his dosage has to be proportionally increased. I wish we were still just on the Propranolol because the new med really seams to upset his stomach. Right now he gets medicine 6 times a day. He does pretty good keeping it down and falling back to sleep when we wake him up to give it to him, other than the tummy aches with the second one. At our next appointment in 3 weeks, maybe we can make more adjustments.

Jimmy and I both have alarms set on our phones for the 6 times he gets medicine. I hook him up to the oximeter a couple times a day, just to double check. I take his pulse like a psycho mom! Basically what he has will be fine as long as we keep an eye on it and he takes his meds. We continue to pray that he responds to his meds and stays healthy. Fevers are what throw everything off. Dr. Herrera is a Christian and we could not have asked for a better doctor in any country. Because of UNICAR and Dr. Herrera, we can manage his condition from Petén. That wouldn't have been possible a couple years ago. I am SO thankful this did not affect our ministry here.
  I shared this in our update. I have learned a lot in the last month... lots of Spanish terms for things pertaining to the heart mostly. The most important thing though was what Jimmy shared with me. I remember being afraid in the hospital and Jimmy telling me that faith is a gift that God gives us. We get to trust Him for our future for our own benefit. We look back and clearly see God’s hand through all of this, so how can I choose fear? So that’s what I do when I start to panic, I look back and thank God. One day we will get to share that with Titus. We can tell him how he was intricately designed by God and how God used that design to show us his power and love for all of us!
Our long legged boy!

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