A Normal Life?

Wow! It has already been a month since I lasted posted and I have to say that must be a sign that we have settled into another level of normalcy. That is if you consider having to still deal with 02- 24/7, meds and nightly g-tube feedings a normal life for an 8 month old. Although I don't think too much about all the "what ifs" that could happen to Mason, those possibilities are always there. Ernie tries to tell me not to worry. I shouldn't worry about what will happen to Mason. I don't worry about everything that could happen to the other kids, so I should be the same with Mason. That is just not realistic. The fact of the matter is, he only has 1/2 of a working heart, he will most likely always be on medications, he will most likely go into heart failure one day and need a transplant, he will probably always be immunocompromised and the list goes on. There is not a single other parent we know personally that can say they face these lists of "probabilities" in their child's future. Yet, here we are leading our newly defined "normal" life and he wants me not to worry. I'm just not there yet and maybe never will be.

I have mentioned to others that this journey has really put our lives into perspective. We have a house full of beautiful things, furniture, clothes, toys, etc. and we don't even need them. Since we have been home we have stayed more time at my Mom's and don't miss those things one bit! For some of us, it truly takes some kind of life altering event to make us realize what really matters in this life. I am privileged to say I have been part of events that I would wish upon no other, but that have led me to a closeness with God I have never had before.

Funny thing is, you would think that what has happened to us would be humbling but in some aspect the intensity of what we have lived through can almost make you feel invulnerable. I wonder once in a while if God will give us another little test and that normalcy and invulnerability will be a thing of the past. So for me, keeping the "what ifs" around can in some way keep me grounded.

I saw a little saying on a forum that I really enjoyed..

God gave him such a big heart, he only let him bring half.

Now that is optimism I can learn from!

So what do we do for Spring Break?

The realization of our new life has hit it's first obstacle and that is what to do for spring break. Although we only have little Mason and Jordyn here with us it has been extremely difficult to decide what to do. Besides trying to be ultra conservative with spending, basically everything we looked into involved too much of a hassle for Mason. Cruise-great but what to do in the middle of the ocean if something happens. Vegas-lots of people, have to cart 02 concentrator around. Scottsdale-same thing, plus I don't' think I would want him in any pools quite yet. Mexico-would be great to travel to a resort and have the kids meet us there but the US is warning against all travel into most of those resort cities-cartel violence. Camping-probably the best option, although the most work, and we still have to take the 02 and/or oxygen bottles along. No campfires for us! It's silly though, if this is an obstacle, we have to be one of the luckiest heart kid families on earth. After Mason's near death experience in December, he is doing well and we couldn't ask for more. So maybe this spring break will be spent at home or fairly close by...

I don't think I ever wrote about our first experience in finding out Mason had HLHS. It was a rolller coaster from the start, but then again whose story isn't? I had my 20 week ultra sound in Las Cruces at OBGYN and associates. Dr. Castillo had delivered Jaylen and Dr. Ortiz had been taking care of me prenatally with Jaylen and now with our new baby. As the ultrasound got underway, the tech had a puzzled look on her face shortly after she began taking a look at Mason's heart. And so the story goes, she walked out to bring someone with more experience in. The funny thing is that the cardiologist and high risk ob from UNM happened to being having a clinic there on that very day. ( UNM holds specialty clinics throughout the state on various months and God was certainly looking out for us as He put us all together at that moment in time. ) After confirming, what looked like a serious defect, the cardiologist, Dr. Beth Goens, asked us to go up to Albuquerque the following Tuesday to have a fetal echo done. I had resigned myself to believing that it couldn't be as bad as they were saying, critical aortic stenosis, potential lack of growth of the left ventricle, those words were not meant for our baby. I truly believed that his little heart would grow and show everyone how miraculous God is. Instead, God's plan for Mason was much greater as we would learn in just a few short months.

Ernie flew us up to Albuquerque early that next Tuesday and the flight was uneventful. Our hearts were filled with hope as we arrived for our visit. Ignorance is bliss. Dr. Goens described what she thought Mason's outcome would be once he was born, as well as the possible options we had: termination of pregnancy, compassionate care, palliative surgeries, or heart transplant. The more we spoke with Dr. Goens, Dr. Moore (high risk ob) and their nurse, Pamela, the more we felt they were pushing us to terminate the pregnancy. Today, reflecting on what they were saying, they must have had to be so insistent on a decision because legally terminating the pregnancy would have to be an urgent matter-I had only a matter of 2 weeks to decide if this was the route to take. They kept telling us over and over how difficult the surgeries were and how our lives would be drastically changed; how going through this pregnancy would result in our child having a lifetime of doctors visits, possible surgeries, draining of financial resources and most importantly affect the rest of our happy family. As the reality of the situation hit Ernie and I, we could only look at one another and trade teary eyed glances and our grip on one anothers hand melded us into one.

We left UNM and decided our plans to stay in Albuquerque overnight just didn't make sense. We wanted to be back at home with the kids-at least that would bring us happiness and we wouldn't be left alone with our thoughts. When we hit the run-up area on the runway, Ernie just sat there for what had to be about 5 minutes. The controller came on the radio and asked if Ernie knew where to go! So he snapped out of the fog he was in and rolled out to the runway and we got clearance to take off. Only a few hundred feet off the ground and gust of wind hit us and jolted us to the side. Thus began what would be the worst flight of my life. The beautiful, windless, rolling mountains we flew over just that morning began looking more and more like one huge black pit. The winds started gusting and hitting the plane from the east. It was like those demolition derbies where the cars just hit you relentlessly from the side when you are pinned up against the wall. My heart was racing and my grip on the back of his seat was beginning to make some serious dents! Suddendly the assault came from above and the plane dropped 1000 feet in an instant and I had enough. We were near T or C and I begged Ernie to land there. He checked the weather and found the winds to be gusting around 36 MPH/tailwind-not something you want to try and land in. I was so desperate to land, I kept asking isn't there anything else around here and then I heard, "Don't tell me my engine's gone". What?!! The plane began to sputter and I thought this would be it! I shouted out-declare and emergency-land!! After, shouting out a resounding, "Where???!!!???", Ernie just took control of the situation and began looking over his instruments and turning knobs-sure enough the engine picked right back up! Thank God. We didn't know what had happened but we figured we could make it to Deming and land there. When we started to descend in Deming the sun was right in our eyes. Just as we came closer to the runway, we noticed a large portion of it blocked off! Fortunately, Ernie handled the plane perfectly and set us down past the trucks and chevrons blocking the runway. We decided he would fly on to Silver City and then drive back to pick me up. I got a ride to the local Walmart and waited there for him. He never insisted I get back in the plane, and for that I am so greatful.

In the short time Ernie had been flying I had been able to rid myself of the fear of flying in a small plane. This experience left me wondering if I could ever get back in. Later, he realized he had leaned the fuel mixture too much and thus the engine was starving for fuel. The simple turn of the knob filled the engine with life. Simple decisions have big impacts-Mason was going to get our full attention and we would be choosing life, no matter how difficult it would get. We knew God would take care of us all. It, too, was a simple decision to make.

This single ventricle thing is a piece of cake

Mason seemingly glides along in his everyday routine completely oblivious to how special he really is. He's just a six month old who is happy, alert, reaching for everything and loving the tastes of new foods and drinks. I think we have learned a few little things during this ordeal and the most important ones that come to mind for me are 1) the rest of us haven't even begun to know what it feels like to have gone through so much and you think you've got problems?; 2)Mommy & Daddy are truly your best friends and advocates and in most cases will be there for you no matter what, so even if you don't wanna be seen with us later on-we'll be there if you need us, waiting on the sidelines; 3) the best things in life really are free-like smiles, kisses, coos and that sweet, innocent baby smell; 4) babies really are in charge; 5) God chose us to take care of his special, little boy and we have to take that honor and try to give him the best of the human spirit. We sure are lucky.

We had a 6 month pediatrician's visit Thursday and you know what that means. Shots! The regular round of 6 months shots, plus a flu shot. Mason has pretty much glided through all his shots previously and so this time around I expected the same. Poor Mason, he was blindsided and developed a fever of 102.2 by 12:00pm. After I stripped him down, gave him more Tylenol and some juice, we stayed up for a few more hours and he finally settled back to sleep. I'm guessing it must have been the flu shot that made him miserable. Dr. Etheridge was pleased to see how well he was doing and presented us with the fact that Mason, at approx. 15.04 pounds, was in the 10th percentile on the growth chart. Great news-we are still on the chart!

Mason is the superstar in that office, as soon as we check in the front, we are whisked back to one of the rooms in the back. Dr. Etheridge doesn't want him exposed to more germs and so he gets some special treatment. This includes getting the first in appointment. Dr. Johnson popped in to say "Hello" and take a look at famous Mason. He said he hadn't realized we were the family with the infamous kid.

Well, it looks like Mason may have some local company regarding his condition. Our ER nurse friend, Marsie, (Mason's Godmother) became aware of a young mother who is having her first child and she believes it to have HLHS. We offered to help in any way we could; especially sharing our experiences at Stanford as it appears that is where she will be delivering or taking the baby to once it arrives. Marsie said this young mother is completely devastated.

Many websites provide statistics that HLHS occurs in 2.1/10,000 of live births, and occurs in 7.5% of all newborns with congenital heart defects. Considering the entire county of Grant is approximately 13,000 to 14,000 people it is very rare to have 2 babies within such a short time and distance to have this particular heart defect. We can be thankful that we were diagnosed while the baby was in utero and that surgical techniques have improved over the years. I'm hopeful that if Mason ever needs a transplant, they will have been able to grow his heart from his own tissues/cells. In the meantime, Mason makes things look easy. I can't say enough how greatful we are to God for that and how thankful we are to have so many friends and family praying for us. We couldn't be more blessed.

Now, this is cute!

* Congenital Heart Disease Webring *
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Time Out

I had seen an advertisement for the upcoming George Lopez show to be held at Don Haskins Center in El Paso, TX earlier in the week. The last time we went to see him was 2 years ago with our dear friends, Bill & Marsie. Thinking of those fun times brought back some great memories and made me want to see him again. Of course, Ernie was up for going and for the next couple of days I debated whether or note we should go. Any decent seats were going for a considerable amount of money and I just couldn't bring myself to purchase them. As many of you know, we are the last minute type of people. Just about everything we do is last minute or we just can't get out of the house in time. So, to traditions sake I waited until 3:30pm on the day of the show to purchase tickets. Since Grandma is in Deming, I had given her a heads up and asked if she would be willing to watch Mason for a few hours. Even though the tickets hadn't been emailed to us before we left, we decided to go and figure it out when we got there. We packed up Mason & Jordyn and headed out to Grandma's. Since the show was at 8:00 I asked Jordyn and Grandma to give Mason his 8:00 meds themselves. So to make a long story short-we got there , were able to get the tickets and saw a pretty funny show. We got to Grandma's about 2:00 am and Mason had been asleep since 9:30pm. I didn't have the heart to connect his g-tube and set up his formula so I figured I would wait until he woke up hungry; which ended up being around 5:30am. He drank his bottle and went promptly back to sleep! This is the first time in his short life that he had not been fed overnight! I don't think we can do that very often though, those darn calories are too important and in order for us to meet our "goals" we have to hook him up for overnight feeds. It sure felt good to go out and have some fun and felt great to know how well he did without me!

We have occasionally followed a blog about Baby Gracie, who is another baby with HLHS. I just checked her blog and found out she had her heart transplant a few days ago. Unfortunately, it did not go well at all. Ironically, her new heart was not functioning properly once they put it in-the left ventricle was not contracting. So here they are again-basically in the same position where we all started-the left ventricle not working. Her parents made the decision to not let her suffer any further and took her off of ECMO. I found myself in tears thinking of how this sweet baby was leaving this earth and wondering if this would be happening to us anytime soon. When you have a baby with such a devastating condition such as HLHS it is so easy to get trapped into worrying about what the future holds. Reading blogs about children who haven't made it is the hardest of all ,but as I have said before, we have to have faith in God. Just like leaving Mason with my Mom the other night allows me to feel normal, leaving him in God's hands each day gives me peace of mind. For tonight, no more reading about anyone with HLHS.

Hope for children with Hypoplastic Left Heart Syndrome
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