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!

Sunday, May 29, 2016

Titus' Birth Story Pt 2: Meeting Their New Brother

MaG made us this sweet video for Mother's Day. We were all very much looking forward to being together again!

video

 Titus took his first taxi ride, on the way to our rented apartment. It is like he is our first baby! Maybe we forgot some things in the last 4 years, like how to chill out. He had been in the NICU, so I felt like I did with my preemies... like I needed to watch them sleep to make sure they kept breathing. (Seriously, we watched them sleep for the first 6 months.)
Going up the elevator
I love how excited the kiddos were!  
  
 MaG caught a little piece of their excitement here:
video
 And here are the video versions! 
video
video
video

 He was a little yellow, so we let him get a little bit of sun and it fixed him right up.
 I wanted SO much for everything to be normal again, for us to start being our family of 6.
But, it just wasn't going like I wanted it to. We were going to head back to Petén on the 13th. This got pushed back to the 16th because of my complications that were still coming. With each issue that got resolved something else would arise. 
 Even worse, Melissa noticed that Titus' heart might be beating faster than it should. It wasn't all the time, but enough to where she thought sometimes his nail beds were a little blue. Jimmy called our pediatrician in Petén once we realized something might be wrong, he was the only pediatrician we trusted at that point. He recommended a pediatric cardiologist in Guatemala City. Unfortunately, the earliest we could get in was Monday afternoon, the 16th. The first time I got really concerned was when we were sitting in the urologists office that Friday. I saw his carotid artery pulsating very fast, too fast, even though he was resting. I showed Jimmy and he didn't think it looked right either.

 For some reason, the previous Wednesday I started having lower back muscle spasms, like yell out loud painful. I was really scared, I had never experienced something like that. I couldn't sit for very long but if I laid down I couldn't get up by myself and it was a long painful process. My back was locking up. I thought it would go away once I finished my second set of antibiotics for an infection, but it didn't, it just got worse. I cried a lot. I was scared to carry my baby. How were we going to return to Petén and Jimmy get anything done with me needing all of this help. At that point I didn't even know how I was going to get on the plane... plus, was there something still wrong with our little boy? I didn't want to believe that.
The night before Titus' appointment I remember it being 4AM. I had already woken up Jimmy several times and felt bad to do it again because he had an 8 hour drive back to Petén the next day. I was laying there on my back, in so much pain and I couldn't move. I just prayed. Melissa had asked people to pray that it go away by the next day. I was too embarrassed to explain this weird issue to ask anyone for anything. Then, for some reason, by the time the sun came up, my pain was completely gone. 5 days of it getting progressively worse and then just gone. That was God. I could walk and hold my baby just fine. Titus was going to need me that day and for the next 3 days. God knew that. So that's why I wanted to share this part. God's care was evident in every single step of this messy story.

Wednesday, May 25, 2016

Titus' Birth Story Pt 1

I don't remember feeling so uncomfortable during the last 2 months with Eden. Jonah and Silas were born at 7 months, so that was a cinch after I passed the morning sickness. This little boy though, he was all sprawled out. He was so low I felt like I couldn't walk longer than about 10 minutes the last couple weeks without looking so weird I was making people uncomfortable. His backside was still so high that I had constant heartburn. He moved nonstop, punching and kicking. The movement is very reassuring that he is healthy in there, but it also felt like he was trying to break out with his heals right through the middle of my rib cage. It's funny to see him now. He moves a lot while he is sleeping, so it makes sense that he was never still on the inside either. 

We were in Guatemala City for 9 days. Then Jimmy came and we had another 5 days before it was c-section time. The dates kept changing, but I think my c-section was at about 39 weeks exactly. I was trying to savor what baby kicks felt like since this is probably our last, but I was READY to get him out!
Leaving our apartment
We arrived at the hospital at 7:20. My surgery was scheduled for 10:00. I was really hoping the same OB from last time that assisted my OB would be there and he was! I was also hoping to get the same female anesthesiologist that was in the operating room with me. (I kind of had a fiasco with a male one while we were trying to give birth naturally last time.) She was there too, SO grateful! That assisting OB is perfect for that job. He is really funny. He knew we are Christians, so he played Marcos Witt in the operating room. He's good at lightening the mood.

Things have really lightened up at that hospital anyway. They let Jimmy go into the operating room this time once they were ready to cut me open.
Jonah asked for Dada to send him a picture of himself in his doctor clothes! So this was for him.
He even filmed them taking Titus out. Yes, I have watched it, probably shouldn't have. I found out that they used a spoon. Titus' cry was so sweet and gentle. He still now doesn't let it rip very often, it's usually just one yell. He is THE quietest baby. It kind of worries me that I won't hear him in the middle of the night to tell me he is hungry.
Titus James Dinsmore
 born at 11:32
9 lbs, 3 oz
21.25 in

This time they showed me my baby right after they pulled him out... the sweet, very long, little man! Then they brought him back a minute later and I got to kiss him and look at him real good.

There was a problem with my c-section though. Evidently my bladder adhered to the top of my uterus after my last c-section which if it was caused by the surgery is called secondary endo. I already knew that at one time I had stage III endo based on a surgery I had had to get pregnant with the boys. I have sticky insides that aren't always in the right place. Who knows unless you get a video of your insides! My OB did say I could have another baby. Did you hear that, Jimmy?! He said that WE COULD HAVE ANOTHER BABY!! That thought is payback for making me laugh so much after surgery. It hurts!

So my bladder got cut through when they cut open my uterus. Thankfully it wasn't a large hole. Jimmy actually got to see it... I know he was thrilled. So then I got to meet a urologist too. I got to hear his voice at least. They kept saying I was asleep, but I wasn't. I am thankful that this complication wasn't any worse because I know it could have been. Jimmy went with Titus, so he wasn't there when they were repairing me. My surgery lasted 3.5 hours. Poor Jimmy. He was worried like last time.

Recuperating from something like that isn't a pretty process. I was standing in my hospital room 3 days later with all kinds of disgusting things still attached to me and Jimmy says sincerely, "You are so beautiful!" I know there were some serious "mother of my baby" hormones at work there, but that is true love! Jimmy stayed with me from Friday to Monday, every night. He's my sweetheart!
Titus in the NICU with his daddy
I'm so thankful Jimmy was there because he truly was an advocate for Titus. From the operating room they took him to the NICU. They could hear liquid in his lungs. They were also concerned that they might be a little under developed. I realize the complications with his lungs might have been avoided now if we had waited to go into labor before having the c-section instead of a scheduled one, but knowing what we do about his heart now, this very well could have all been part of God's plan to protect him. At that point the first pediatrician came and told me it would be 6 hours. Titus was not given surfactant, just put on a CPAP machine, never going higher than 40%. I think this was the first passive decision of many that was made for Titus in that NICU

After the 6 hours went by we were told 12. Then the next conversation was 24 hours. I was upset because there were several doctors involved by this point, but I didn't feel like any were taking an active role in making any types of decisions for Titus. We weren't ever told of any setbacks, just of extended time frames. Each doctor came by and checked his stats for a couple seconds, but no one took personal responsibility over him. Once they checked out for the day, your baby sat there for 12+ without anyone being able to make any decisions for him. He was doing good, but no one would ever lower the oxygen level after saying they were going to several times. This is what was making me frustrated. By the time there were 4 different baby doctors on our bill, we were given a new timeline of 48 hours without any explanation as to why the timeline had change, other than no one ever turned down the oxygen.

My major issue with the doctors in this NICU wasn't that my baby was there for longer than I thought was necessary, but it was that there was no priority given to uniting my baby with his mommy once he was stable. He could have stayed in the NICU with me being able to hold him and do skin to skin. Also I would say (or shout) that they are ANTI breast feeding (so take your "breast milk is best" sign down!) In Petén everyone nurses, it's not like that in the capital. I had met the lead pediatrician there once before at his practice. It was 6 years ago, right after we got back with our preemie twins. He said, "You are never going to be able to make enough milk for these boys." Then he wanted to sell me very expensive formula which had the stuff they "needed" in it. Well I nursed those boys exclusively for 6 months, no solids. Then we went all the way to a year, no problem. He was wrong, dead wrong! I'm figuring out I'm kind of a lactivist I guess...

 My OB understood my frustrations and wrote an order for them to let the nurses roll my bed in there the next morning for a little visit. I couldn't see his face from that low, but I did get to pat his back.

 I wanted to touch him to trigger my body to do it's job. I wanted to give him the colostrum that had been designed by God to help him! There isn't a breast pump, electric or manual in the whole hospital. Jimmy drove around town trying to find one that first night once we realized we weren't going to be allowed to nurse.
He found this little glass German pump. It was horrible, but did the job. I was very happy to see it. My baby got his colostrum. The doctors kept saying, "Your milk comes in on the third day." I don't think it works like that, at least it hasn't for me. There is a lot of good stuff those first couple days. Jimmy made sure Titus got it! Now we were back to like we did the first 2 months with the twins, pumping every 3 hours but with a much less sophisticated pump. Also, with my 32 week preemies, the NICU in Jacksonville gave me much more access to them and skin to skin time. They even tried to get them to nurse even though they couldn't get the suck and swallow thing down until around their due date. Different world.
Jimmy fought like crazy for the doctors to let Titus nurse. Finally the second night they said that they would let me try. Of course there was no follow through, so the first time I was scheduled (that's a silly word to use in regard to nursing a newborn) to go up, I got there right after the nurse had given him Pedialyte, because no one told her. This is their quality work. So of course Titus wasn't interested. 3 hours later, he was hungry and it worked, just like it's supposed to! So from that point on until I left the hospital, every 3 hours they would wheel me up to the NICU and let me feed my baby! I am so thankful. That would have not happened without Jimmy.

Eventually after we were 60+ hours in, we were told by some hospital staff that they had not ever heard of the pediatricians releasing a baby from the NICU to go down to the maternity ward. Once you are in the NICU, you stay there until you are discharged. They are concerned with the care the baby would receive in the regular nursery. They wanted them to be monitored more closely. Well that's fine, if that is your standard practice, but don't keep telling me 12 more hours, when you never had any intentions of releasing him.

We had an extended conversation with 2 of the pediatricians on Sunday afternoon and they said that they would release him to go home with me on Monday. I knew they would change their story because they had every single time before. Later Sunday night, sure enough, when Jimmy had left for a short time, they confronted me and said that they were keeping him until Tuesday, not for any reason, because nothing had change, just to observe him. In fact, they said it like the other conversation never happened. I started panicking. I knew the bill, after my complication and now with the NICU was going to be way more than we had thought. I was thinking, this may never end, they are going to get every last penny they can out of us. I was crying... again.

If those pediatricians would have spent half the time observing Titus as they did defending themselves to me, they might have noticed something about his heart. Something very important. They just kept tagging in their friends, making sure everyone got a piece of the pie. In the end, I thought their fees were incredibly disproportionate to the care they gave my son in comparison to what we paid the hospital, the OB's, the anesthesiologist, and the incredibly nice urologist for their excellent care of me. It's shameful what they did! If I had it to do over again, I think we could have used the hospital we liked and avoided the conflict with the doctors in the NICU by hiring our own pediatrician ahead of time, one that shared our same values and ethics and have him in charge of Titus' care.

One of the pediatricians did say, right before we left the hospital that we should get an echocardiogram done on him in about a week just to be safe. He wasn't really clear as to why, other than a comment about infants born before full term don't always have their valve close all the way.

Everyone taking care of me was wonderful. The nurses on the maternity ward and even in the NICU were angels (they should have gotten the pediatrician's wages). I am so thankful for all of them.
One of Titus' sweet nurses
I was so exhausted from fighting for Titus. I prayed Sunday night that God would just fix everything without anymore conflict. I didn't want Jimmy to have to argue with the pediatricians anymore. Sure enough, Monday morning one came up to us in the hall and said, "This is plan B, but we will let him go home today." I was so thankful!
Ready to take his son home! No wires or tubes!
Up to that point it hadn't been the birth story I wanted for either of us. All the joy had been sucked out of it. I was a mess, still with stuff connected to me. I definitely didn't feel connected to Titus or even like I had had a baby at all. I wanted to be. I loved him very much.

Friday, April 29, 2016

Waiting for Titus

Last Saturday we flew to the Capital to wait for Titus' arrival. We are very thankful for Missionary Air Group and our missionary pilot friend, Paul. Jimmy was going to fly me to Guate, to avoid the messy 8 hour drive which would be full of contractions, and then drive the kids there but sharing flights with others going back and forth through this ministry made it possible for us to all fly together and save 2 days of travel. This way Jimmy got to help us get settled, go to a doctors appointment with me, and make it back in time for classes.
Jimmy's mom, Melissa/MaG, arrived in the capital that evening. We are so thankful for her help. We are staying in an apartment with a full kitchen and she has been making healthy food for us to eat. 
{The fresh produce section in Guatemala City... I am SO jealous!}
I was dreading all the fake food we would be consuming staying here temporarily and this has turned out to be such a treat! Last night our sides were broccoli, sweet potatoes, and asparagus! At this point I cannot stand/walk for very long periods of time without having tons of contractions so I'm not sure what we would have done without her help. 

Jimmy flew back to Petén last Monday. He is finishing up the last week of classes for the semester today. Due to having to let go the national we were working with, Jimmy gained 3 extra classes plus my 2 for the last 2 weeks. That is an extra 15 hours per week! We are so thankful for another missionary friend, Jim DeHart who volunteered to take one of the classes and be completely in charge of finals week which starts this coming Tuesday. This is such a blessing to us. We aren't sure how next week would have worked without him! Do you see how God is taking such good care of us?!

Before Jimmy returned to Petén, we got to go see Titus again!
He looks perfect! He was measuring at 8.5 pounds at 37 weeks. Sometimes those measurements are off, so who knows, but he does feel huge! My c-section is scheduled for May 6th. I have another doctor's appointment today. Jimmy is driving back to the capital tomorrow. I am just praying that Titus sits tight until then! 

The kiddos are loving their MaG time!


{Their first seesaw experience!}
{Waving bye to Daddy as he flies away.}
{Pedicures with MaG!}

On top of teaching classes Jimmy has been staying up late checking off his self imposed "to-do" list. I think he is nesting, haha! He has sprayed for termites, regular bugs, polyurethaned one of the cribs (that he built for the twins 7 years ago), put another coat of sealer on our concrete shower, buffed and polished my counters, cleaned our shower heads and water heater, and tons of other stuff I can't keep track of... basically everything that might be too smelly for the baby to be around and little thoughtful things that don't matter at all to him but that he knows I would appreciate. He is a sweetheart!
 Here is Titus' corner in our room, all ready for him! We are all very excited! 

I am so thankful for God's hand of protection on this baby and our family and for sending so many wonderful people to help us. We are truly blessed!
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