Finally Home and an Update on Addison's Heart

After weeks of waiting, we finally got orders to come back to Houston. We went through out processing everything that had just been in processed and got on a flight to come back to Houston. As you might imagine, the flight home was somewhat uncomfortable for me at 7 months pregnant but I made it! And it was worth it! We took a cab from the airport to the car dealership where we had put a car "on hold" since we had sold our second car before we left. That night we came over to see the house we had closed on a few days before. Thank goodness we actually liked it! We will really like it when all of our furniture comes back from Italy in mid August. A few days later I flew to Midland where I spent some much needed time with my family. Both my mom and Curtis came back to Houston with me the following week to help with some things at the house and also to be there for my first round of appointments at Texas Children's. What a blessing it was to have them here. 

Addison with her toe in her eye at 30 weeks

The first round of appointments at Texas Children's consisted of another echocardiogram of Addison's heart, a meeting with a cardiologist, an ultrasound, an appointment with a maternal fetal medicine specialist and a few days later an appointment with the cardiac surgeon. Let me start by saying that the whole process at the hospital the first day was amazing. I was blown away by the timeliness of the staff and the sincere care I felt by everyone we met. People were kind and made us all feel like individuals. We weren't just another case to them and that is something I don't think you would get everywhere. 

These appointments gave an update on how Addison is doing. We learned during the echocardiogram that her heart still has only one ventricle. Her specific case (only having the left ventricle) is very uncommon (.1% of all congenital heart defects) but they can still work with it. Another complication has come into play though. Her aorta—which supplies blood to her extremities—is very small. Right now it is not an issue because babies in utero have a tube that takes oxygenated blood to their extremities. This tube closes though within the first 24 hours of being born. So, when Addison decides to enter this world, she will start receiving PGE through an IV almost immediately and this will trick her heart into thinking she is still in utero and will keep the tube open. From there, she will be reevaluated and will most likely have open heart surgery within the first week of life. This is different from what we originally thought but I know now that nothing will be for sure until she is born. Even though medicine and technology are both very advanced, it is hard to measure anything perfectly on an active baby in utero. It is amazing to me they can measure anything in her heart at all!

This past Thursday, I went back for a second round of appointments. This time we talked to a neonatologist, a genetic counselor, had another sonogram and toured the Neonatal ICU and the Cardiovascular ICU. 

The neonatologist explained that when Addison is born, I will get to see her briefly. She will then be hooked up to whatever she needs to be hooked up to (oxygen, IV, etc.) and will be placed in an incubator. From there Winston will go with her to the NICU where she will get situated in her new home. Like I said earlier, she and her heart will be reevaluated and decisions will start being made about what will be done next. 

The NICU and CVICU tours were hard and emotionally draining. They made things very real. In both ICUs we saw babies of all sizes hooked up to different tubes, some on ventilators and all fighting for a chance at life. In just a few months we will be there with Addison and seeing what it will be like is hard to swallow. This was not part of my vision. Having my baby taken from me at birth and being hooked up to machines and taken away to a NICU is not what I had in mind when I first found out I was pregnant. But - I am so thankful. We could be in a place or time when they wouldn't even know she had a problem with her heart. I could be all alone without the support of family and friends. I could be a single mom wondering how I am going to pay for all of the upcoming medical bills. But that is not the case. We have some of the best doctors at our fingertips, all fully paid for by medical insurance provided to us by the Army. I have wonderful support of family and friends. I have a loving husband who is truly amazing. And more important than anything else, I have my faith in Jesus Christ. 

Addison at 32 weeks

At this point all we can do is pray. We are praying for miracles and know that God can perform them. We are praying for Addison to be a fighter. We are praying for doctors, surgeons and nurses to make the right choices. We are praying for peace. We ask you to please pray with us.

Euro Trip 2014

It was six weeks from the time we found out we were going to be coming back to the states to the time when we got orders that would actually get us back. In the scheme of things, six weeks doesn't seem like that long. In a foreign country, in an Army hotel with a sweet little pup who has no idea what is going on, six weeks can feel like an eternity. Those were some of the longest most hopeless days I have ever experienced. We were just waiting. They had given us a time we needed to be back for the sake of the pregnancy and travel but we were in the government's hands as to when we would actually get to come home. We needed to be in Vicenza during the week for the most part because Winston had to do a few things with making sure there was progress on our orders but other than that, there was nothing holding us there. So, we decided to travel. And travel we did! 

We started with a day trip to Venice. 

The next weekend we went for the night to Cinque Terre, Italy. Talk about a relaxing and beautiful place! We hiked, we ate, and we relaxed!

Hiking in Cinque Terre, Italy

The following week we took the train to Florence and then on to the Amalfi coast. These places were both amazing! 

We played serious tourist while in Florence. We did a walking tour and then had a guided tour of both the Uffizi gallery and Academia (where Michelangelo's David housed). We also ate our best meal of the whole trip here.

Looking out over Florence

While on the coast, we laid by the pool, took a day trip to Capri and once again, ate some delicious food.

View from Praiano, Italy

Boat trip to Capri

The next weekend we took a road trip from Vicenza to Salzburg, Austria, and then over to Garmisch, Germany. We made a stop along the way home to see the famous Neuschwanstein Castle. We took Beau along on this trip and enjoyed all of the cool mountain air.

Mirabell Gardens

Neuschwanstein Castle

The "Top of Germany"

The next weekend we took another road trip. This time we headed towards Croatia. We spent time on a quiet beach in Brela, then went and spent some time in Dubrovnik, and then spent a night at a palace in Split. All amazing and beautiful places.

Brela, Croatia

Dubrovnik, Croatia

Split, Croatia - where they have some serious guards

Our last weekend of traveling, we took a trip to Brussels, Belgium. While there we met up with one of Winston's childhood friends and his girlfriend. It too was a great weekend.

Some of you might have seen all the photos that Winston posted throughout our travels. I must brag on him a little because all of the trip planning and photo taking was his doing. I typically have a tendency to hide out and without him I might have done that. He made sure that the time we were "stuck" in Italy was not going to be wasted. There were points during our travel that I thought "I don't even care about any of this." I just wanted to come home. Now that I am back though, I am so thankful for his tedious planning and will never forget all of the beautiful places we got to see. I am one blessed girl. 

Blessings

The first couple of days after finding out about Addison's condition were so incredibly surreal. Just like with this blog (and a lot of things in life) I had this vision of how it would go when I had my first baby. I have wanted children since I can remember and when I was little I always told people that I wanted 100 girls and 10 boys. That has changed just a little but I still want a big family. That being said, finding out I was pregnant for the first time was incredibly exciting for me. My vision started almost immediately. I am sure that I am no different from most women but I started imagining when she would be born and how and what it would be like when she came home. The details are not relevant but let me just say, when I found out about her heart defect all those dreams came crashing down. Now, I know that nothing in life is guaranteed. I have suffered quite a bit of loss and seen a lot of heartache in my 25 years so I am fully aware of that. It goes back to the control issue though and trusting that whatever happens in life fits into a bigger plan created by God. I am still human so even though I have 100% faith in God's plan, I still don't always like the way things turn out and fight feelings of disappointment. With all of that, God always has a way of reminding you of his ever encompassing presence. 

When Winston found out that we were being sent back to the states, one of the first things he had to do was call his new commander and tell him that he would no longer be coming to work for him. From previous experience, Winston's commanders weren't always the most compassionate of people. Not to say they weren't nice but they never gave me the warm and fuzzies. Their wives didn't reach out much either. When Winston called his commander in Italy we had a totally different experience. There was an automatic concern from not only the commander but also his wife. They reached out immediately in a way that I will never forget and unless they read this, I don't know if they will understand how much their compassion really meant. That weekend that we were digesting all of our new news, they came over to the hotel on post and brought us lunch. They have three precious young girls that came to play on the playground and both the commander and his wife talked to us for  hours. We talked about anything and everything. They had had a similar experience with their middle daughter about 6 years ago and shared with us some of the emotion they had felt in finding that out. I felt cared for and cared about. Then, before they left, they shared that when they found out about their middle daughter, a friend of theirs had made a baby quilt with the verse they had been clinging to sewn on it. They had held on to the blanket but felt that it was time for it go to someone who needed it more and they wanted Addison to have it. The quilt is full of colors and in the middle on a small patch it reads: 

"For I know the plans I have for you" Jeremiah 19:11

Such a simple yet powerful verse. What the blanket says has the part of the story that I always remember. God has bigger plans for me, sometimes plans I don't like. What I always need to remember though is that the verse doesn't end there. These plans are "to prosper me and not to harm me. Plans to give me hope and a future." Even if I don't understand God's plans now, they are for my better. 

The commander and his wife shined light into our life that gloomy Saturday and to them I will be eternally grateful. I am also so thankful for God's continuous little ways of making sure we remember He is always present and that that will never change.

Decisions, Decisions, Decisions

Winston and I started researching children's hospitals right away when we got home Friday afternoon. We had been told that we could choose anywhere in the U.S. but it was recommended that we pick a place close to home so that there would be an automatic, built in support system. Because of that we limited our search to the larger children's hospitals in Texas and Colorado. It didn't take long for us to decide that Texas Children's Hospital in Houston was going to be our best choice. It was a gut feeling. One that as I write this two months later I am glad I went with. Winston is from Houston and we have great friends in the area. It isn't super close to Midland (my home town and location of my family) but there are direct Southwest flights and my parents do a lot of driving so a seven or eight hour car drive is doable for them. So we had chosen. Houston it is!

Now what? It was still the weekend and there was nothing we could do to actually start the process to get us to Houston so instead we started trying to find a place to live once we got there. Originally we started looking at rentals but quickly opened our options to also buying. We could either put money into a rental home with no equity or we could buy and make it an investment. Winston and I like house hunting anyway and have watched a lot of HGTV House Hunters in our day so we pulled up the real estate sites and started looking. Lucky for me, Winston had been watching the Houston market for quite some time. Before we got the Italy assignment he had been looking in case we ended up moving to Houston. When we got Italy he didn't turn off the Houston "in our budget, in neighborhoods we liked" alerts on the different sites. Well, that Friday it just so happened that a new house popped on the market that he hadn't seen yet. The house was located in Spring Branch West which is considered a transitional neighborhood but from Google street view it looked like a really nice place. The houses around it were all well taken care of and there was a nice park really close by. Long story short, a realtor friend of Winston's came to look at the house and walked through with us on FaceTime. I also had a dear friend whom I trust come walk through to get another opinion. Some might say we are crazy, but after a little bit of a bidding war we bought the house that weekend! We didn't know if we would be able to see it in person before we actually closed on it but we both knew that if it was meant to be then it would be. In a few days time, we chose Texas Children's and had bought a house. No need to waste any time! 

Where do we go from here?

It was Friday, May 9th and we had been processing Addison's heart condition since the evening before. We had scheduled a time to talk with the pediatrician on post to get his recommendation of what to do next and we also had an appointment to sign a lease on our new Italian home. We went to the lease signing first but informed the landlord, our realtor, and the military housing office of our new news and said that we had not discussed our options with the doctor yet and could possibly be leaving. Everyone was very understanding but I also think no one actually thought we would leave Italy for this. Not because it isn't a big deal but because they have doctors there who deal with pediatric heart conditions just like we do in the states.

We left from that meeting and headed in to meet with the pediatrician. I will never forget the look on his face when we sat down in his office. One of pity and deep concern. He knew our fate and that he was going to have to be the one to tell us. My first question was, "Where do we go from here?". His exact words were, "Well, you can kiss Italy goodbye." Winston and I had discussed that if he told us we were coming home that we would have him explain why. We weren't going to just except it and move on. So we did just that. Padua has a great pediatric hospital with a great pediatric cardiology center. They are just as capable there of fixing Addison's heart as the doctors are here. Some minor details though were that we were in Italy where we have no family and have not had a chance to learn the language. Just think about how overwhelming hospitals in the states can be when they do speak English everywhere. The language barrier adds a whole new dimension. Plus, like I said, we have no family it Italy. It isn't to say that we couldn't make friends and gain a good support system before she is born but there is something to be said about family and friends that are like family; people who know you and get you.

Winston's next question was "then, where are we going to go?" If Padua has a good heart center, we didn't want to come back to the states to be seen by a military doctor with no experience operating on infants. To our surprise, the doctor at the military clinic said there was no way he would ever send us to a military installation for this. We were going to choose based on where "home" is and where the best doctors are for our situation. He told us he wanted to do some research over the weekend and find a pediatric hospital where they do over 200 cardiac surgeries a year. We left his office with our new homework assignment. We called family to say we were coming home and we processed this new bit of information. We had been in Italy for two and a half weeks and we were coming home. God always has a bigger picture and it was time to trust that and know that we were in the best hands possible: those of our one and only creator and Savior.

Where It All Started

Winston's promotion to Captain

When I first created this blog in April, I intended it to be a place for people to check out pictures of Winston's and my adventures while living in Italy. In my head I had this vision. I was going to become one with the Italian culture and I was going to sit at cafes drinking cappuccinos and writing my blog. My first post was going to be pictures of my newly decorated Italian home. My next post was going to be the fabulous baby moon cruise that Winston and I were planning on taking through the Mediterranean. We all have our visions, right? How we imagine life is going to go.  Let me restate that, how we want life to go. For those of you who know me well, you know I like to be in control.  Who doesn't though? As a Christian, it is a daily struggle for me to hand control over to God. Well, when I first married Winston, I knew that God was going to work on me because when you marry someone in the military, you have to learn that often times you are not in control. The Army (or whatever branch you are with) is now in charge. They tell you where you will live, when you will live there and for how long. They, like other jobs as well, will also tell you how much time you get to spend with your spouse. For those of you who know Winston, you might know that he doesn't deal with that well either.  He accepts some of it but he isn't one to just sit back and watch. If he can make something work for his better he will. His mom always says that things just seem to work out for him.  That is true to some extent but he also works really hard in the areas that he can to make sure things are in his favor. 

Vicenza, Italy

All that being said, when I found out I was pregnant with Addison in January, Winston and I had talked about maybe getting out of the military. He doesn't see it as a life long career and he would like to get into the business world before he is too behind to catch up. We were living in Lawton, Oklahoma at the time and were also dreaming of moving close to family and living in a real city, like Houston or Dallas. We agreed that the only way Winston would stay in the Army was if he got one of our top choices of places to live. Those places included Europe, Hawaii, and Savannah, Georgia.  Some might think those random but the first two were there for obvious reasons and the third was a place we could see ourselves really enjoying while still being close enough to home. Contradictory reasons but whatever. For anyone affiliated with the military, you might know that often times you aren't going to get what you want. Our top choices were a suggestion for branch but I never saw them actually giving us any of those places. I knew for sure that we were going to get somewhere we really didn't see ourselves being and we were going to get out. Shows me what little I know. A month (could have been a week or two but it felt like a month or four) or so after putting in our request, orders came out that we were going to be sent to Germany. What?! They actually gave us our TOP choice.  Well then a few weeks later they said just kidding, you're going to Italy! Like I said before, the Army is in control and you just have to listen. Well when all this happened, I was just a few months pregnant. I prayed, I thought, and I cried. It all sounded so cool. Who wouldn't want to live in Italy? But, I am super close to my family and I was going to be a having a baby so did we really want to move half way across the world? After the prayers, thoughts and tears, we decided we couldn't pass up the opportunity. Who knows if we would ever get the chance again and it was going to be such a growing experience for the both of us. Plus, it was going to be so cool! We left April 21st and embarked on our new adventure. 

Addison at 21 weeks

When we left, I was 20 weeks pregnant. Around 20 weeks, all women have an anatomy scan of the baby to make sure they are growing properly and that nothing is wrong. I knew when we left I needed to get one scheduled ASAP once I got there. So I got an appointment scheduled for May 7. We went in thinking it was just a routine thing and left unsure of exactly what was going on. The place we were sent to was great. Nice people, nice facility, etc. Only problem was that they didn't speak much English. That is all good and fine until they notice something isn't right with your baby and can't tell you exactly what they see because you don't speak the same language. After the sonographer spent about 25 minutes on her heart alone, and hadn't been saying "all normal" like he had for everything else, I knew something wasn't right. After he was done he came back with a google translation on his phone that said that he couldn't see all four chambers of Addison's heart and he wanted us to have a second opinion. He sent a write up to a doctor on post and we could talk to that doctor for more information. It was almost 6 PM by the time we left so it was going to be the next day before we were able to speak with anyone. That was one long night. 

The next afternoon when the clinic on post opened, we found the doctor that the write up had been given to.  His first question for me is do you want to keep this baby? Was it that bad? Did she have no chance at a normal life? He explained that the reason he asked that was because we were close to out of time by Italian law to terminate the pregnancy. Once we discussed that further and said there is no way we would terminate the pregnancy we moved on with options. He told us that we had an appointment with a pediatric cardiologist in Padua (about 30 minutes away) on Tuesday. Mind you, it was Thursday. Were we really going to have to wait until Tuesday to figure out what was going on? Lucky for us, he said if we could get over there in the next hour she could see us right away. It was slightly stressful getting there: we didn't know where we were going, we had a donut on our car so we couldn't drive it on the autostrada, and we don't speak Italian. We got decent directions, borrowed a car from an amazing couple we had met the day before, and with Google translate and gestures figured out the communication barrier. It helped that the cardiologist spoke very good English and had studied in the U.S. 

After a long echocardiogram on Addison's heart and a long discussion with the cardiologist we learned that Addison has a double inlet, single left ventricle with transposition of the greater arteries. Huh? We saw some diagrams and pictures but processing what we had just learned was a challenge I could never describe. We drove home from Padua with the knowledge that we are NOT in control and our lives had just been turned upside down. Where do we go from here?