Like I said, my 4 hours in the recovery room are still a blur, but what I do remember is being able to touch Georgie from my bed to his pod. Prior to this, George was in the transitional nursery where Rich was able to meet him and hold his hand. It was the shortest 3 minutes of my life. He was rolled away so quickly. My family had been waiting in the lobby to see how we were doing.

At 5:30AM, I was moved into my private room where I spent the next 7 days. George was admitted into the NICU on the 9th floor and I was on the 5th floor. Thankfully, we had the support of my family where I was never alone and neither was George. Of course, my first question was, “When can I see my baby?” My heart was in a million pieces come to find out that I was to stay on magnesium sulfate for 24 hours via IV. This meant that I was not allowed to get out of my bed until the medication was done. I’m sure you can imagine how frantically I messaged Rich to get updates. I had doctors, nurses, lactation consultants, social workers, etc. coming into my room and all I wanted to do was sneak off to see George. I couldn’t even imagine what Rich was going through this time, but it’s when he really thrived.  Rich kept me updated seeing that I couldn’t sleep knowing that my baby was just upstairs and I couldn’t be there with him. I remember Rich telling me about his first experience during rounds. This is when the entire NICU team gets together to discuss the baby’s plan for the day. He explained how all these acronyms and numbers were being thrown around and how overwhelming it was to have 15 people huddle up by George’s bedside. Eventually , I was able to sit through my first one and it was as if Rich was a pro. He was providing feedback about George’s improvements, setbacks and asking amazing questions. I felt so silly because I couldn’t even get a single word out!

George was admitted into the NICU due to his low blood sugar and was put under a heater to maintain his body temperature. Upon his arrival into the NICU, George was put on CPAP (a machine that helps with breathing by releasing pressure into the lungs) due to his prematurity; however he was on the lowest settings and was on room air. He had an IV line providing Dextrose (to aid his glucose being in the low 30s), lipids and fats, and saline. He had two EKGs done in his first day of life (DOL) to check his heart activity, which came back normal. He also had a feeding tube in case he wouldn’t take his bottle. George also had an ultrasound done to check his kidneys, as well as, his testis. They noted that his testis hadn’t dropped, so they wanted to make sure everything was okay. He also had a head ultrasound and I kid you not, I laughed when Rich told me the reason was because of his big head. Apparently, his mancrush fellow  said that he wasn’t surprised because well… dad has a big head!

What we were most worried about was his echo.. this is the moment we had all been waiting for. Throughout our entire pregnancy, we were told he had something going on in his heart. I kept asking Rich what they were waiting for. In my head, I kept trying to stay positive. Maybe they hadn’t done it because it wasn’t that urgent and he wasn’t showing any clinical signs of being in any kind of danger.

George had a long first day and it felt like ages for me. He was born on Thursday just after midnight and I wasn’t able to see him until Saturday at 2:30AM. At 1AM, I was already calling for the nurse to give me the green light to leave my bed. I didn’t sleep from Tuesday night up until Saturday and I was entirely delirious, but what I did know what was that I wanted to see George.

The first time I was able to hold George was by far the best moment of my life. It had felt like I was pregnant for 3 years and I was finally able to hold my baby. And he was so perfect and beautiful. I did my full inspection to make sure he was all in one piece. My eyes filled with tears as I picked him up and then the nurse suggested we take him off CPAP. Oh my goodness the 4 hours I was able to spend with him were so precious! Rich and I appreciate the little milestones like this. Being off CPAP for a few hours at a time was a big deal.

We continued going to our appointments and the dilation in his heart continued the same; however at this point we’d be reminded to not fixate on measurements. The reason being the further along we were, the less accurate they were.

We finally made it to December and I was running towards the bathroom at least 5-6 times a night and sleeping was impossible. So far I had a headache and migraine-free pregnancy, which I was more than thankful for. I had suffered from chronic migraines for a few years now and all of a sudden, I started to  have episodes of extremely bad headaches. I pinned it down on lack of sleep, migraines and the pregnancy, so I just sat in our bedroom in the dark trying to fight off the headaches with Tylenol.

During my appointment on December 4th, the doctor noticed my blood pressure was very high and I told him about the headaches— he said that he would admit me had I had a headache during my visit. High blood pressure during pregnancy could pose a very dangerous situation for George and myself because it could indicate preeclampsia. This was also the visit where he said that George’s head was too large and after the pelvic exam, there was no chance he would be delivered naturally. So my C-section was set for December 20th. I sat there thinking December 20th??? I’m about to pop now!! I quickly asked if we had to wait that long. He explained that we had to play it safe to ensure his lungs were mature enough and he felt that 37.5 weeks was the right amount of time.  He instructed me to monitor my blood pressure at home and thankfully my mom has a blood pressure cuff, so I did. Waking up with a headache wasn’t entirely uncommon for me, but the next morning I did as the doctor told me and my blood pressure was through the roof. Rich stayed with me in the morning because he knew I wasn’t well, so he suggested I called the doctor. At 7:30AM, I called in and they told me to continue monitoring and if it persisted to just go in to the Emergency room. I ensured Rich I’d try to sleep it off and that I’d be okay while he was at work. At 2PM, my blood pressure was getting higher and higher and Rich had only been in the office for an hour before he raced home. By 3PM, we were already being admitted and they hooked me up to monitor my blood pressure, as well as George’s heart rate. At 7PM, a nurse came in and said they found some protein in my urine and the high blood pressure along with the headaches concerned them. At this point, I was asking if I could eat because I was starving and craving Taco Bell, so of course, I asked if I was ready to go home. The nurse chuckled and said, “Instead of going home, we’re going to have a baby tonight!!” Rich and I looked at each other and next thing you know, I was signing all the consent forms for surgery. They put me on magnesium sulfate for the preeclampsia and administered a steroid to assist with George’s lung development.

I was rolled into the OR at midnight and I became so overwhelmed with the amount of people in the room. I felt so unprepared for what was to come because we didn’t know what to expect. This was the moment we were so anxious for and I just prayed I would hear him cry. I couldn’t wait to meet him and finally hold him. We heard him cry on December 7th at 12:53AM and I cried with joy. I hoped to feel him in my arms, but they quickly showed him to us and took him away. It’s all a daze as I heard the doctors talk about vacationing in Patagonia, I knew something wasn’t right. I kept asking Rich what was going on and he just held my hand while telling me everything was okay. I heard a metal tool fall on the ground and someone say, “WHOOPS!” I was losing blood and my uterus wasn’t contracting. They gave me a medication to assist with this. I started to get nauseous and Rich held a bucket in case I was sick. The anesthesiologist administered not one, two, but three different medications to help relieve the nausea. I started to feel overwhelmed and couldn’t contain myself. The anesthesiologist asked if I liked music and I couldn’t even bring myself to get a word out. Rich quickly said, “Yes! She does. She likes Adele!” We listened through around 5 Adele songs (If i remember correctly) before we were finally done. I was taken to the recovery section which I can’t remember much of due to all the medications. I briefly remember finally meeting George as they rolled him past me towards the NICU. This was the beginning of a journey with our little George in the NICU.

On November 7th, we went in for our usual check-up. George was due for measurements along with an amniotic fluid check. We had an ultrasound weekly, an echo every 3 weeks and measurements every 3 weeks, as well. During the ultrasound George was expected to move in utero and practice breathing within 30 minutes, which he did not do. Of course, Rich and I became masters in eye-rolling because George was so active, but the second we stepped foot in the hospital he didn’t make a peep! During this OBGYN appointment, our doctor sat us down and told us that George was an abnormally large baby. He mentioned fetal overgrowth syndrome and said that George looked like a strong candidate for this condition. He continued to tell us that he would most likely need to be delivered early due to the size of his head and that we need to hope he tolerates being in utero until week 37. If not, he would need to be delivered early via C-section. This meant that if George was born prior to 37 weeks, he would more than likely be admitted to the NICU, which we weren’t entirely surprised at seeing as he was having cardiac complications. My heart was so set on natural delivery, but I slowly let go of this idea because I wanted to make sure George was delivered safely. I constantly blamed Rich for the size of George’s head, even ’til this day. I continued to ask the doctor what steps we should take to prepare for George and he told us to sit tight and not bother with educational classes. He said we weren’t your “average joe” pregnancy and that the classes would just overwhelm us because they tend to apply to women delivering naturally. However, he did suggest a NICU tour.

At this point, they had sent us to another floor to perform a non-stress test due to the lack of movement and breathing during the ultrasound. The test consisted of belts being wrapped around my belly to measure the George’s heart rate. 18 minutes in and all we could do is roll our eyes, until the woman monitoring the test asked me if I wanted Oreos. BOOM— his heart rate spiked and as I started munching away. Yay!! We passed and we head over to our NICU tour. The NICU tour was informative and difficult. I remember walking through the halls completely unprepared for what was to come. I saw babies all tubed up and hooked up to a ton of machines and my eyes filled with tears. I had no idea how I would handle seeing my little baby like this, but I took comfort knowing that I had Rich, my best friend, by my side to walk the journey with me and George. 

Throughout the past 5-6 weeks, my dad and Rich had been working on our apartment painting, replacing the flooring, installing new furniture and prepping for George. Rich was so exhausted every weekend and we hadn’t gone on a date night for a while, so he suggested we go out. At this point, I was heavily pregnant and all I wanted to do was nap. He had to drag me out to Jersey City where we had such a fun night. Jersey City is another place we hold to close our hearts. During the first two weeks of my relationship with Rich, we went on a date by the riverwalk. Rich knew how I felt about PDA and that I wasn’t the type to make a move, but Rich was the exception. We were walking back to the car that night and I stopped and kissed him. So on October 14th (at 1am, so technically October 15th) he wanted to go for a walk along the riverwalk. I was totally dreading it because my feet were so insanely swollen, but I agreed to it. I complained the whole time about how tired I was and how I just wanted to get into bed. So as we continued to walk, he stopped me and started to remind me how defining certain moments were and how that kiss early on in our relationship sealed the deal for him. He got down on one knee and asked me to marry him. All I could do is hug him and cry—thank you pregnancy hormones! Anything and everything made me cry. I didn’t want to let go until he said, “umm.. don’t you want to see the ring??” I won’t say it was so perfect because I still think it’s perfect. Until this day, I think what made it so memorable was the fact that we didn’t have our phones and we truly shared such a beautiful moment.

So Rich and I were engaged for a total of 4 days before we tied the knot on October 19th. It was such a hectic time between his family visiting and making sure everything was ready for the wedding and baby shower. Our families were meeting for the first time and everything went so smoothly. Rich didn’t get his wedding clothes until the day before the wedding and I didn’t try on my altered dress until an hour before we were going to actually get married. All the girls had their hair done at the Nexxus Hair Salon and then my sister and I head over to get our makeup done. I had a total of 6 minutes to get my dress and shoes on before I had to meet everyone at Central Park for pictures. Not to mention, I had not finished writing my vows and my phone was on 6% battery. I quickly wrote them in a cab and texted them to my mom before my phone died. It had been months of keeping George’s name a secret and right before our ceremony started, we decided to ask the officiant to reveal his name during the ceremony. It was such an emotional time for Rich’s family as they knew the meaning behind it. After the ceremony, we explained the significance of the name George to my family and they instantly understood why we kept it a secret.

Two days later, we celebrated George at our baby shower with 60 of our closest loved ones. Our baby shower was so special to us as we were initially hesitant to have one. Not too many people knew about George’s heart and the troubles we could potentially face upon his arrival. It was hard to think about keeping myself together for a party considering what we had been dealing with.

The following week I booked our officiant, which I was able to get recommended from a friend. And in the midst of it all, I got a phone call from the hospital. George’s genetic test results were in. Rich panicked and held my hand as I placed the genetic counselor on speaker. She proceeded to tell us that the findings were inconclusive. We were mind blown.. what in the world did this mean? She explained that they could neither confirm nor deny any CTD based off the panel; however they did find a FBN2 mutation that has never been reported. There was a chance that he had CCA- Congenital contractural arachnodactyly, and of course this was extremely rare. Some of the physical characteristics that come with CCA are tall height; skinny, long limbs; long, skinny fingers and toes; multiple joint deformities present at birth,”crumpled”-looking ears; and scoliosis. After we hung up the phone, I turned to Rich and told him there is absolutely no chance George had this. He was so incredibly active all day and the more he grew, the more active he was.

We took this information to our OBGYN where he continued to explain that he noted they were not able to locate the CSP- cavum septi pellucidi in his brain. He also suggested that we have blood drawn for a parental genetic sample. This would provide more information in regard to the FBN2 mutation that was found. It constantly felt that George was under a microscope. We were told that usually the CSP is harder to find later on in pregnancy, but they expected to see it. It wasn’t as concerning because they saw the corpus callosum, which was a thick band of nerves that connected the left and right sides of the brain.  The doctor also said that he noticed some scalloping in his brain. He recommended they conduct a brain MRI where I’d lay in a machine for 40 minutes while they took images of George’s brain. So we went ahead with the brain MRI, conducted a glucose test, and Rich and I had blood drawn to send off for parental testing. Rich went into a panic and of course, hit google instantly. He wouldn’t sleep and couldn’t focus on anything. He would tell me he just couldn’t handle if something was wrong neurologically and he felt so helpless. The next two days felt endless for us, but on October 5th, we got the phone call from our OBGYN to tell us that the brain MRI and glucose test came back normal. Another relief and that night, Rich booked our wedding venue at Asiate in the  Mandarin Oriental.

On October 11th, we received a call from genetics. I was in a flower shop with my mom trying to figure out arrangements for the baby shower, as well as, the wedding. This is the call we had been waiting for as it would provide a lot of information. If either Rich or myself had this gene that George presented it would be reassuring that he would most likely be healthy. Rich was constantly texting and calling me to see if I had gotten a phone call. While I was on the phone with the geneticist, he texted me yet again asking if the results came in and I texted back, “Yes, I have it!” He was so anxious and asked, “and????” I again responded with, “Yes..I have it.” He called me immediately, but he didn’t catch the hint that it turned out I had the same genetic mutation. I could hear the excitement in his voice and until this day I’m sure he teared up. He told me to come home because he’s taking everyone out to dinner to celebrate. The next day Rich seemed like a different man and it was as if it was all he needed to finally enjoy our pregnancy.

 

It was clear that there was no medical intervention that would help George, so Rich and I agreed to move forward with getting married. A week went by and he started to seem so hesitant as he didn’t want to make a big deal out of it because it was “JUST PAPERWORK.” (Even until this day, we joke about this) One night, we got into a heated discussion about the fact that it was a big deal to me because I was changing my name. His rebuttal was that he wanted to make sure I had the perfect ring, the perfect proposal and everything I deserved. He didn’t want to put pressure on his family and told me to not get my hopes up because it was expensive to travel from the UK. It was hard to argue with him, but I ensured him of how happy and so in love I was. He briefly mentioned that we had agreed to legally get married to his family, but downplayed it. Little did he know, I was making plans behind the scenes. I spoke to his sister and mom to arrange a date that they could come so they would see us get married. Flights and hotel were booked— YAY! The plan was for them to show up the day we were getting married.

Two weeks later, I briefly mentioned I started contacting venues for a private dining room and this provoked another argument. He wanted to know why I was only looking for a venue for 10 people and I had to tell him a white lie about the people I had in mind. I told him that he told me to not expect his family to travel for our wedding and that he hadn’t even told them we were actually following through. He quickly messaged his mom to tell her she needed to come to the US — yes or yes. The next day he was desperately messaging everyone and we had to come up with lies to convince him that there was no chance they would make it. His sister told him she had an important trip booked for the dates we planned to get married and he was devastated. His mom couldn’t bring herself to tell him she couldn’t make it, so after a long day we decided to surprise him via Skype. Rich couldn’t believe it. Although things didn’t go as planned, I was beyond thrilled to see him as happy as he was.

At this same time, my mom was trying to secretly plan a baby shower, which I totally intervened. I started getting involved and planned our wedding and baby shower. I wanted to make sure that Rich’s family had the best experience during the short 5 days they’d be here. We were finally enjoying our pregnancy and Rich planned a bunch of fun activities in September. He took me to see Sam Hunt, a friend from the UK came to visit and we spent the weekend in Lake George, and on my birthday he took me to a 3 star Michelin restaurant— Jean Georges. That night we went to see Wicked, which I had wanted to see for years! My birthday was such a special day as we really enjoyed our little George.

Our OBGYN told us that she would no longer be able to care for us as we are high risk and that we should look into an institution that provided cardiac surgery services. She explained that we should expect for George to need at a minimum one surgery upon birth and a 3-4 month stay in the NICU.

Rich and I would spend our days together at home. Every morning was a struggle as we’d wake up hoping it was all a dream. I would cry every day I woke up and thinking about anything else was impossible. Rich would stay up nights on end researching Marfans and Loeys-Dietz and everything that came with it. We had little to no interaction with the outside world. Our lives came to a full stop and we agreed to put our big wedding on hold. It was weeks and George’s name was not said, we were heartbroken. Eventually, Rich and I packed our bags and road tripped down to Maryland. We decided we needed to be get our acts together and be strong for George. I reminded myself and Rich that in life we’re given what we’re able to handle and I knew for a fact that this was something we could handle.

We switched our care completely over to Columbia as I had done my research on pediatric cardiac surgeons and high risk OBGYNs. It only seemed like it was the right thing to do for George. Tuesdays were long, exhausting and busy days where we’d spend 5-7 hours in the hospital getting ultrasounds, echoes and consultations. Eventually, it became the norm and Rich and I became well-versed in measurements, z-scores and CTD lingo. With every echo, we continued to see our baby’s heart vessels becoming larger and larger and the suspicion for CTD became greater. My heart sank every time a physician would start a sentence with, “So we had a conference about your baby this week and…” It felt as though our baby was an experiment because he was such an edge case. And even until this day, Rich will jokingly say, “Remember when I asked you what your biggest fear was and you told me it was for Georgie to have a really rare condition that doctors couldn’t figure out.”

On September 6th the phone rang and the first results were in —everything came back normal. We expected this as our blood work had all been normal up until this point, but it still relieved weight off our shoulders. We were still going into the hospital every Tuesday and at this point, I could constantly reassure Rich that I just KNEW that George was okay. Every ultrasound Rich would ask, “Do you see a clef lip, a club foot, scoliosis, any brain abnormalities, do his limbs and or fingers look really long?” He had done so much research about CTD that he knew what the markers were, but George wasn’t showing any of them. We were always told that he was a big baby due to the size of his head and abdomen.

We were far from ourselves. How was I supposed to enjoy my baby? How was I supposed to not stress? How do I know what is best for my baby? Rich spent hours and hours researching and I couldn’t bear the thought of googling anything. We sat down with a genetic counselor where we went through our family history. We then shifted topics to discuss the two CTDs (Marfans & Loeys-Dietz) they suspected George had and all the potential risks. The chances of having one of these diseases she spoke about were 1/20,000. The counselor told us that due to the rare nature of these diseases, genetic testing was very expensive due to scarcity of labs that offered testing. The initial panel would take 7-10 business days and would check for depletions, duplications and made sure the right number of chromosomes were present. From there a lab would have to culture more cells in order to run the second panel. This entire process could take 4-6 weeks. She continued to remind us that we had to make a difficult decision in regard to whether we wanted to run the test considering the cutoff to terminate a pregnancy in New Jersey was 22 weeks. I was 20 weeks and this was not even an option for us. I was very firm in making this clear during the meeting and on this day, I was scheduled to have an amniocentesis, which we opted out of. After a long conversation, Rich and I had decided that if there was no medical intervention and no benefit to our baby then it just seemed selfish. There was risk associated with the procedure and we wouldn’t necessarily know the severity of the disease if the genetic testing did present something.

Our OBGYN recommended us to a high risk doctor because we were now considered a high risk pregnancy. Termination was a constant reminder during all of our appointments, but it never crossed our minds. After another ultrasound and a talk with a high risk doctor, we decided to do the amniocentesis in order for physicians to better understand the level of care we would need during delivery. I cried and prayed during the procedure that my little George would be okay. Rich held my hand and I was entirely terrified when I saw the needle they would be sticking in my belly. We walked out of there in silence knowing we would have a long 4-6 weeks ahead of us.

Our love only grew for each other with every appointment. We decided it was only right for us to tie the knot, so we started looking at venues and I even went dress shopping. We had told our families that we had decided on a date and visited a few places we really liked. Rich and I visited our OBGYN and she assured us that what was found during the anatomy scan was most likely nothing. On August 15th, Rich and I went to the first of many echocardiograms and over 100 images of our baby’s heart were taken. Eventually, we sat down with a pediatric cardiologist and she started to draw a picture of a heart and all the vessels. She started talking about the findings— dilated aorta, dilated pulmonary artery, dilated umbilical vein, PDA, VSD, ASD… and my world fell apart. I was uncontrollable and it all felt like a nightmare. Rich held me all while asking what all of this meant. We were told that our baby most likely had an extremely rare connective tissue disorder (CTD), but it could be a bicuspid value or idiopathic (these two weren’t as likely as CTD). I couldn’t process. I couldn’t get a word out. I cried and cried while Rich kept firing away with questions. We spent hours in the hospital that day, but little did we know this was just the beginning. The cardiologist advised us to consult with genetics and recommended an amniocentesis.

A few days later, my mom suggested I go talk to an adult cardiac surgeon she works with. She wanted me to understand what we were getting ourselves into. He sat me down and told me put a lot of thought about keeping my baby. He said he treats adults with heart diseases and the life they live, if any, is very difficult. I broke down and when Rich saw me, he knew I was a mess. The car ride home was quiet and so were the next three weeks. As soon as we got home, we laid in bed and just cried until eventually we both fell asleep.

The next box to check was the 20 week anatomy scan. We were so anxious that we actually scheduled it a week and a half in advance. I couldn’t wait to see George for an extended period of time (Any ultrasound time was so precious as we’d have to wait four weeks to see him). Anatomy scans are pretty lengthy as they look at the baby thoroughly and take measurements of various different body parts. My mom came with Rich and I as we wanted her to see the baby live, but we all started to feel some tension in the room when we noticed the sonogramer looking intently at the heart. I started thinking, “Why is she taking so many pictures?”, “Is it routine to look this thoroughly at the heart?”, “What are all these measurements and what does that number mean?” My heart was pounding and I turned to Rich and instantly knew he was thinking the same thing. He quickly asked her if everything looked okay and she said she couldn’t confirm anything. She asked if I could walk around and drink some juice to see if the baby would change positions. Thirty minutes later we walked back in and she said the doctor requested some more pictures and measurements. We were told to step out into the waiting room and 20 minutes felt like an eternity. Finally, we sat down with a doctor who told us that our baby was showing an abnormal aorta. He explained that 99% of the time, it’s nothing, but he recommended that we see a genetic counselor, as well as, have an echocardiogram just to be on the safe side. We didn’t think much of it as the doctor (whose name is George, by the way) said, “You should only worry if I’m worried, and I’m by no means worried.” That stuck with us as we left the office. That week consisted of getting our appointments set up, but our hospital didn’t have anything soon, so we decided to schedule at Columbia Medical Center.