A Letter to Maia...

Dearest Maia,

October 15 is Pregnancy and Infant Loss Awareness Day. It’s a day of remembrance, so today we honor both you and your big sister, Marissa, along with all the other babies that left us too soon. Not a day goes by that your daddy, big brother Marcus, and I, don’t think of you. You will forever have a place in our hearts….

I remember the day I learned I was first pregnant with you. I wanted you so much but felt so guilty that I was already replacing your sister. So I whispered to Marissa, “it’s ok, you’ll always be our first baby girl.” We had always had our hearts set on having 2 kids, so after Marissa passed away, we welcomed the chance to have another baby.

I remember the day of your ultrasound and how excited we all were. Marcus predicted “girl” correctly, but not only did we learn you were a girl, we were quickly introduced to Hypoplastic Left Heart Syndrome and the world of Congenital Heart Defects. It became your big brother’s goal to not only pronounce your diagnosis but to know exactly what it was. Although the initial shock wore off instantly, we knew we were up for the challenge. Your sister had prepared us for anything and everything.

I remember thanking Marissa for making our family stronger, and for making me realize that I was stronger than I first thought. You were our rainbow baby. The hope that comes after a loss, the sunshine that comes after a storm… but you turned out to be so much more.

I remember calling the nurse at Labor & Delivery and letting her know that I’m having random contractions about every hour or so. Then having to call her back a couple of hours later to tell her they’re now coming every 30 minutes and that we’re on our way because we live at least 45 minutes away. When we arrived at the hospital the contractions were less than 5 minutes apart. Forget the induction, you did not want to wait!

I remember your birth. You did not cry and the silence was deafening. You were born in your sac and the only thing the Dr. managed to say was “oh wow, this is rare.” Your daddy described the scene as something from National Geographic, as the Dr. cut open the sac to take you out of your bubble… then you tried to let out a tiny cry. But we didn’t get to hold you, as you were quickly taken away to be evaluated.

I remember first touching you and holding your hand in the NICU. Your eyes were open and you curiously looked around at everything and everyone. You looked perfect, so nice and chubby, it was hard to believe you were such a sick baby.

I remember when your big brother first saw you. He was dressed up as Dr. Marcus “Ouchie Specialist.” He knew your diagnosis and was ready to help you anyway he could.

I remember holding you for the very first time. You were 3 days old and it was the night before your first heart surgery. You didn’t cry, you just stared at us and went to sleep.

I remember sending you off to surgery on Labor Day. The anesthesiologist, Dr. Nguyen, told us to say goodbye in the most somber of voices. He then stared shockingly at us as we proceeded to give you a pep talk about being a good girl, not having too much fun, and behaving in the OR. Then we kissed you and gave you high-5s.

I remember seeing you after surgery. You were so puffy and swollen that your chest was left open and your heart was beating right before our eyes. Countless tubes and IVs were coming out of your tiny little body. Your surgeon, Dr. Cohen, described the surgery as “uneventful, the way it should be.”

I remember when you were on life support for the first time. You were a month old and had lost a lot of weight. You were tiny and frail, but you were so alert and aware, and you still had that twinkle in your eye. We knew it wasn’t your time yet.

I remember when you started to pee… again. You were recovering from heart surgery and your kidneys had completely shut down and you had been on dialysis for weeks. The excitement of your nurse, Tanvi, was overwhelming. We had never been so happy to see pee.

I remember when you got your trach. It meant your face was free of the breathing tube and the “Hannibal Lecter” mask that came with it. It was such a memorable moment to see your beautiful face again. It was an early Christmas gift for all of us.

I remember when you first discovered you could suck your fingers, but only on your right hand. You tried many different combinations before deciding which fingers you liked to suck on the best. It became one of your most favorite things to do. We always felt so bad when you had to get an IV on that right side, but that didn’t stop you from trying to get to your fingers.

I remember when you were baptized and you wore the same gown I was baptized in. You were surrounded by so much love and laughter, and we were blessed to witness such a special moment. It was also the first time I had ever seen Holy water poured over a baby’s head with a syringe!

I remember when you first started smiling. It was about a month after you got your trach and you were so picky about who to smile to, and I didn’t make the cut. Eventually, you learned to smile at everybody… except for those you didn’t like or didn’t know.

I remember the first time we heard you cry. You brought your daddy to tears. It was during one of your first sessions using the Passey-Muir valve. You were slowly learning to breathe out normally through your nose and mouth. You hated it but later you didn’t mind it at all.

I remember your love of watching sports on TV. If it was anything other than Sports Center, soccer, football, baseball or basketball, you could’ve cared less. It was very obvious your night shift nurses, Todd, Mark, James, had a big influence on you. However, you were not too interested in the Super Bowl and your nurse, Angela, took a pic to prove it.

I remember feeding you for the first time. You loved it! With you there was no such thing as oral aversion. You loved anything that came near your mouth, including the green sponge on a stick, and your favorite, the suction. It was quite amusing to watch you try and suction yourself sometimes.

I remember when you were decannulated, and your trach was taken out. You had failed the previous tests when a stopper was used to plug up your trach so we weren’t sure how you’d react when your trach was taken out completely. But as usual, you surprised us all with your calm reaction. You were able to breathe normally without any complications, and after a full room of Drs, nurses, and specialists all staring at you for a good 30 minutes, you got bored and went to sleep.

I remember hearing your Drs say “going home.” Those 2 words plus your name had never before been used in the same sentence before. It was a dream that came true. We had only days to prepare and learn about how to take care of you at home, including your new meds and g-tube and bottle feedings. We were so nervous and excited.

I remember the tearful goodbyes as we left the hospital. It was a moment many didn’t think would happen, yet there you were in the stroller as Marcus pushed you down the hallway away from 7 east. We all tried not to cry, but that ended once Oliver, your favorite music therapist, came to serenade you as you left the only home you had ever had since then.

I remember your homecoming. We didn’t get it on film, so we had to do a reenactment! You stared around at everything especially the big TV. I find it difficult to describe in words what it was like to finally have you home with us.

I remember how you hated taking baths. We had to make them short and sweet. But afterwards, you loved being bundled up in your hooded towel as we laid you down on your bobby with your head tilted back to air out your old trach incision.

I remember Marcus changing your diaper for the first (and last) time. It wasn't very enjoyable for him and it was harder than he realized! But we gave him an A for effort.

I remember dressing you up in cute little outfits, finally. In the hospital, you were always hot and preferred to go topless all the time, but I guess it was also convenient with all your IVs. You were still hot and sweaty at home but at least you looked cute too.

I remember waking up around 6am every morning to the sound of your laugh as you lifted your chubby leg high in the air and dropped it, over and over. Your toys would rattle and you thought it was the funniest thing ever.

I remember how you loved being outdoors and when we took you to the park for Marcus’ end of the year party. It was a warm day with a nice cool breeze. Everyone was so excited to see the sister Marcus had been talking about.

I remember taking you to the cemetery to visit your big sister Marissa on her birthday. At Marcus’ request, we brought homemade red velvet cupcakes, balloons and flowers. You were all smiles. Little did we know you’d be leaving us and joining her so soon.

I remember when Daddy brought you back to the hospital. You had been breathing heavily the last couple of days and had been refusing to drink from your bottle. Turns out you had the rhino virus, you had caught a cold, a deadly cold. The Drs and nurses missed us but didn’t exactly want you to come back.

I remember your crazy long hair and all the different ways we styled it. I loved putting all kinds of headbands on you, and you didn’t even try to take them off, so I think you knew you looked cute! Your nurse Taira got you some glittery ones and we had sparkle for days (literally)! We all loved playing with your hair, including the nurses. From pigtails to braids to bangs, I think we tried it all.

I remember the scare you gave us when you couldn’t keep your oxygen sats up regularly. We arrived around 9am to see your room full, as everyone tried to bring them back up for the third time that morning. Your Dr. told us that you might not make it through the night. Your Drs pulled us into a room to talk and they all cried with us, as they told us that they would try everything they can to help you. They had been taking care of you your entire life and had fallen in love with you, so it was hard for them to not feel attached and get emotional. We were all human, a reality check. You were the little miracle that defied the odds. You were the smiling little face that greeted them when they came to work.

I remember how you kept fighting so hard, but yet your condition kept getting worse and your Drs didn’t think you’d make it to your birthday. It was difficult to hear. I even asked your sister if you could stay with us a little longer, at least long enough to celebrate your birthday. I know she watched over you and might’ve been lonely, wanting you with her.

I remember asking your Drs to try and help you make it to your birthday. We wanted to celebrate you, but if you had other plans and would rather not party with us, then we would accept that and go with whatever you wanted to do.

I remember getting a call from Dr. Duncan at 1:00am on Thursday morning, the day before your birthday. He said you were very mad and upset and they were having a hard time calming you down. This meant your oxygen sats were low and your CO2 was high, not the combination we wanted. They all felt better if we were there in case you had other plans. So your Daddy and I rushed to be by your side and drove the same exact route we had driven one year ago.

I remember staying up late the eve of your birthday. I spent the night talking to your nurse Katie and we both were in awe of how peaceful you were. None of your alarms went off and you didn’t wake up once. Katie encouraged me to get some sleep, but I kept waking up to the sound of birthday cards falling off the walls in your room. Then your nino Dada came by at 2:45am, the exact time of your birthday to say hi and sing you Happy Birthday.

I remember your nurse, Angela and I helping you get dressed into your birthday outfit. You wore a strapless tutu dress, with a matching headband and socks. It accommodated your IVs perfectly. As everyone arrived for your big day, I was brought to tears as many of your nurses and therapists came by on their day off.

 

 

I remember when we gave you an impromptu pedicure. It was the perfect final touch to your birthday ensemble! Your Nina Rena and Nina Lydia did the honors.

I remember you looked so beautiful yet so tired. As usual, you seemed to give Marcus all your attention as he lay next to you in your crib. He even joined Oliver, your music therapist, in a duet, serenading you with birthday songs and more. It was overwhelming to feel all the love in your room that day. You could barely open your eyes and I knew you were giving it your all to celebrate with us.

I remember holding you in my arms as you took your last breath. Your breathing tube was removed so we could see your face one last time. I couldn’t believe we were saying our goodbyes as I whispered to Marissa, take care of each other. You were so peaceful as you left us, and I thanked you for the gift of allowing me to be your mommy.

I remember everything about you, and sometimes it feels like both a curse and a blessing. But I’m so grateful for the year we had with you. You brought so much happiness and laughter to everyone around you. I will never forget your strong-willed personality and your overall strength. For someone that was born with an imperfect heart, you certainly made up for it with all the love you brought to this world. Because of you, we continue to appreciate every moment and make the best of every situation. You are truly an inspiration.

Loving you and missing you always,

Mommy