“I’ve always dreamed of becoming a Mom. Even as teenagers (yes, we are high school sweethearts), my hubby and I would talk about our future kids and even had names for them. As we grew and became two hard working adults and husband and wife, becoming pregnant wasn’t easy but when it did happen, it was magical. My husband was at work when I took the pregnancy test. I just sat there staring at the stick with the word ‘pregnant’ on it in complete and utter bliss. My dream was happening!
Now I’m the type person that likes to make everything special and memorable. So I planned a way to tell my husband, a way he would never forget. I ran to the store, got a onesie, that said, ‘And so our Adventure Begins,’ a box, and wrote a note to him from our ‘baby.’ When he got home I told him it was an early birthday present I just received in the mail and wanted to give it to him. Let’s just say his reaction was priceless, and so sweet. When he opened that box and saw the word ‘pregnant’ he looked up at me and his eyes were filled with accomplishment, excitement, and pure love, and he whispered, ‘we did it!’ He wrapped his arms around me and I cried happy, excited tears! We were in complete euphoria at the little secret we were keeping.
Our pregnancy was everything we expected; actually it was better than expected. I never experienced morning sickness, my belly grew normally, and the appointments went great – that is, until our anatomy scan on October 2nd. We went in excited and curious with an envelope in hand for the ultrasound tech to write in the gender of our little one in preparation of our big gender reveal we had planned for a week after. The lady was doing her thing, she writes in the envelope, and then very calmly tells us she will be right back, that she is going to see if the doctor is ready to see us. I didn’t think anything of it, but my husband looks at me and says, ‘there’s something wrong.’ I will never forget the look in his eyes. And me, being the positive one, tells him he doesn’t know that and to just wait for the doctor. We waited in silence for what seemed like a lifetime.
The doctor walked in and as sweet as she can be, she introduced herself and starts the ultrasound herself. She starts to scan his face and begins to tell us he has an abnormality. They’re not sure what it is, it could possibly be this or that, but only genetics and time will tell. This all happened so fast, my emotions got the best of me. I just started crying, didn’t know what to do or what to think, or even how to react. As she made her best diagnosis, cystic hygroma, I still had no clue what to feel. I didn’t even know what that was or what that meant or even what to ask. I was so devastated that something was wrong with our perfect little baby and we had no clue what to expect. The only thing that kept running through my mind was, ‘please don’t lose this baby, please don’t take my baby (meaning the diagnosis).’
The doctor immediately told us we need to do an amniocentesis to rule out any genetic issues. Of course I didn’t know what to do. If the doctor says it’s necessary, then yes! Do it! Now the fear of a huge needle being stuck right into my growing belly, puncturing the placenta, in order to gather amniotic fluid to send off for testing, kicked in. I’m not normally afraid of needles and the procedure didn’t hurt, but the fear of the unknown was the cause of my tears. Before the doctor punctured my belly, Joe looked to me and said, ‘Do you wanna know?’ (meaning the gender) and I couldn’t even speak. I just shook my head yes. The tech immediately and happily told us we were having a baby BOY! Joe took my hand and tried to be as happy as he could, for my sake, (all he wanted was a boy). And from there, I just couldn’t stop – the waterworks and the emotion flooded every bone in my body. Even after we left, we went to have dinner and I still couldn’t keep it together.
From that day on, we told very few people because, to be honest, we didn’t know much ourselves. We took it one appointment at a time. The genetics test came back completely normal and everything else about him was perfect – heart, lungs, brain, bones, all growing perfectly. That was a breath of fresh air.
One thing that got us through the rest of our pregnancy was when our doctor told us to treat Gavin and the hygroma as two different entities. That as long as he was growing and progressing normally then everything would be ok. We continued to every appointment with both the OB and high-risk doctor. As I approached my third trimester, our high-risk doctor wanted to see me twice a week every week until I delivered because not only did I have his condition to worry about, but I also had gestational diabetes and preeclampsia. I had a special diet I had to follow and had to prick my finger and test my sugar 3-4 times a day. Sounds like fun times, huh? My fairytale of a pregnancy was being ripped apart little by little as time progressed.
I did have to do a fetal MRI, which led the diagnosis to Lymphatic Malformation and the preparation of how he will be delivered. Our high-risk specialist and OB worked very closely and explained everything in detail as to what to expect for delivery. Our scheduled date was February 8th, 2018.
January was my toughest month of pregnancy. Between the polyhydramnios (excessive amniotic fluid; by the end of my pregnancy, I had the amount of fluid as if I were carrying triplets), and the massive amounts of water my legs and feet were retaining. I was unbelievably uncomfortable and still driving to my weekly doctor appointments.
February finally arrives and I can see the light at the end of tunnel. Only seven days till we get to meet our baby boy. February 1st my hubby was traveling for work and I went to both doctor appointments. Both went well. On my way home, I started having contractions. Nothing unbearable so I went home to lay down. Well, they didn’t go away… they just kept getting worse. I called my friend and asked for her advice. She told me what I already knew, call my doctor and go to the hospital. Before I did that, I called my husband. He had just landed in Virginia. I said to him, ‘I’m a week out, they’re not going to stop my contractions, book a flight home now!’ He did just that, but his flight home didn’t arrive till 11 p.m. I also called my mom, who lives 5 hours away, I told her the same thing and I also told her to start driving. She called my sister who lived in Orlando at the time and told her to get on the road now in hopes she would get there before I delivered.
I waddled out of my bedroom, bag in hand and asked my mother in law to drive me to the hospital. When we arrived, they checked me and I was 2 cm dilated and fully effaced. He was coming whether we wanted him to or not. They hooked me up to the monitors, placed the IV, and asked me a bunch of questions. My OB showed up and said he was ready, and they were just waiting on the team to get into the OR. Maybe an hour goes by, my contractions are pretty strong, and then my water breaks. I immediately call my husband. I start crying because I honestly didn’t want to do this without him, but I had to be strong because I had no choice. They wheeled me to pre-op and the contractions were getting stronger and stronger.
They strap me down to the operating table and the doctors, nurses, and specialists start to file in. There were about 30 people in my operating room. I felt like I was in an episode of Grey’s Anatomy. Staring at that big light in the operating room while laying flat, enduring painful contractions, on that cold table with people and doctors all around me talking to each other about me as if I wasn’t there. The anesthesiologist placed a mask over my face and I was out.
Now, Gavin was born in a special way. It’s called an EXIT Procedure. This means that halfway through the delivery, Gavin was delivered to his nipple line, then immediately intubated and then he was fully delivered. They intubated him because they were unsure of the security of his airway. He was born at 6:23 p.m. 21 inches long and 7lbs 1oz and as perfect as can be. My husband was able to see Gavin as he was being delivered via FaceTime with a very kind nurse as he was 20,000 feet in the air.
I woke up in recovery with my sister and mother in law by my side. I was able to see Gavin briefly before they transported him, but my vision was blurry and I couldn’t sit up. I was able to touch his little hand. Then I remember waking up in my room to my husband and parents. I was discharged after 2 days and I was finally able to see my baby for the first time.
Looking at my baby for the first time was pure bliss. I never knew I could love someone so much. I never once cried seeing how severe his malformation was. I just kept thinking that that’s my baby. I was so in love.
Because his malformation was so severe, his radiologist wanted to start sclerotherapy treatments (use a needle to aspirate the cysts then inject a medicine to kill the cell that line the cysts) at five days old. Gavin endured sclerotherapy five days a week every week until the beginning of April.
April 26th he had his first major surgery (7 hours long). His plastic surgeon is one of the best if not THE best. He did AMAZING work and the results were beyond what we expected. Recovery was rough. He had multiple days and night where he really struggled but he NEVER GAVE UP. His story was not over.
Once he finally recovered from surgery, healing was a huge issue. He ran into an infection causing his stitches to fall apart. His surgeon had many tricks up his sleeve to help the healing process but the one thing that worked was to let it be and heal from the inside out.
Once healing was resolved, things went pretty smoothly, running into minor speed bumps here and there but nothing he couldn’t handle. When the doctors rounded and mentioned a discharge date, I was in shock. I thought I’d never hear that word. But we were so excited! Although we had his room all ready, we still went home and had to reorganize and rearrange all of the medical supplies and made sure everything was in place and ready for him to come home.
During the seven months in the hospital, he showed so much strength. He is my warrior. Also during his stay, we met some amazing people and created some special friendships from other NICU moms, something we called our MOM Squad, and many of the nurses. They were such a big part of our lives and we are forever grateful for them. He was discharged on September 13th and he had a whole parade of farewells, even a musical number done in his room to celebrate going home. It was so special! Our little NICU Warrior was coming home.
Being home has been amazing. It’s been four months since we’ve been discharged and NICU life feels like a lifetime ago. We’ve gotten into a routine and Gavin has gotten very comfortable being home.
We’re still battling feeding issues but that’s nothing compared to what we’ve overcome. The one thing I’m still not used to is the multiple doctor appointments, which seem like every week. It’s tough because both Joe and I work but thankfully we both have very understanding bosses. Working a fulltime job with a special needs baby can be very stressful. Thankfully we’ve been blessed with amazing home nurses to help us on this adventure.
Home life is yet another adventure we are on as a family of three. From dirty diapers to changing trach ties, to smiles and meeting milestones, to physical therapy and story time, to holidays and birthdays, all memories we will cherish forever as we continue this thing we call life.”