My Dearest Addie,
How are you one today? With tears in my eyes I have to tell you that I am so very proud of you. This year has been such an incredibly tough year, and yet you have worked so hard to overcome every single obstacle that was brought your way. You’re a fighter just like your dad and I- you’re the pink ninja.
My pregnancy with you wasn’t easy. In fact, I was at the doctor often. I had food poisoning before the 2nd trimester and I remember being SO worried that something was going to happen to you. I tried to not take medications because I was so stressed that they would hurt you. I also had terrible nausea and vomiting throughout my pregnancy because of acid reflux. I remember daddy trying to get me to eat chicken noodle soup to make me feel better and getting me ginger ale, sprite, and other remedies. Later, I got cholestasis- a liver and bile issue that 4% of women get. It makes you itchy, and it makes your bile go into your bloodstream. It’s also why we planned to have you early.
When I thought things couldn’t get tougher- we found out that you had genetic problems and you would be born with a sacrococcygeal teratoma. It was the scariest time of our lives. We went to have your anatomy scan at 18 weeks (because I just couldn’t wait to 20) and the ultrasound tech said that you were a girl. We cried and knew right then and there you would be Addison Olivia. But then, moments later, the tech said we’d have to talk to the doctor. Our doctor explained that you had a physical abnormality and I would have to go to a special doctor. What we thought was going to be the happiest day for us turned out to be so very scary. We cried and called your grandparents, worried that you wouldn’t be ok. It was then that I realized I was going to be relying on God a lot. I prayed. I prayed CONSTANTLY for you. While I was teaching, while I was eating, while I was driving…it didn’t matter where I was, I constantly prayed for you.
Then we went to your special doctor appointment. They asked if we would want to “terminate” you because of your genetic abnormality. I cried. I want you to know that not ONCE did I ever think about that. We would love you NO MATTER WHAT and I was appalled the doctor was doing his job by asking me if that’s what we wanted. After talking with him for a longer period of time, he wanted to do an amniocentesis. I cried. I didn’t want them to accidentally hurt you. We ended up doing it, and they were able to run some genetic tests on you. All the big markers came back negative and we were relieved for some time. Still, we saw your special doctor every other week for the rest of my pregnancy to watch your SCT to make sure it stayed the right size. I kept praying for you, for your special doctor, and for us. God was the only thing keeping me going.
After a while, we had to visit Texas Children’s to get 2 fetal MRI’s on us. That was pretty scary too. SO many strangers coming and doing tests on us. I remember crying just wanting you to be safe and ok. God was with us though, and got us through the testing and gave us lots of great information about your SCT and your heart. We left those appointments feeling good, knowledgeable, and better just knowing you would be fine.
The summer went on and my blood pressure got really high. I went to the hospital twice because of it. I saw stars when I got up from the couch to go to the bathroom. That’s all I was allowed to do. I crafted lots of beautiful things for your nursery- baby closet dividers, your name for above your crib, a birth announcement wreath (the one that’s on your door), and of course, I helped daddy put your furniture together. Ok, I didn’t reaaaally help him- but I did boss him around and tell him where to put everything. At one point, on a Saturday night (the day I was going to have my pregnancy pictures taken with you), my blood pressure got scarily high. Too high for my liking and I just KNEW. I knew it was time for us to go to the hospital once more.
Daddy freaked out when I told him it was time to go to the hospital. I was only 35 weeks and we hadn’t intended to pack our bags until 36 weeks. I calmly grabbed my things, daddy packed his, and we went to the hospital. We called everyone and told them it was time to meet you. This. Was. It. I was scared, excited, nervous, and happy all at the same time. They wanted me to try labor- something mommy never anticipated. I was always told we would do a c-section, but the doctors said it’d be ok to try the natural way. I labored all Sunday and by Monday early morning, they decided you and I couldn’t handle it. We were going to have to go into surgery. The first of many.
I got ready, daddy got ready, the family got ready. We took pictures and were off to the operating room. It was time to meet you. I was strapped down to the table with my arms out. There was a drape so I wouldn’t see my insides. They gave me some funny drink before surgery and as they were pulling you out, I threw it all up. I had one guy sucking away the vomit, while daddy quickly told me you were here.
But…I never heard you cry.
In fact, they took you away so quickly because of your SCT that I never saw you. I didn’t realize either that you were struggling to breathe also.
Daddy told me how beautiful you were and that he would be back. He had to go meet you in the NICU. We knew you’d end up there because of your SCT. In fact, we thought you’d be there for a month to have surgery and recover. We had no idea that day. Still, daddy went with you to the NICU, took lots of pictures of you, and met your nurse. Then, he came to get me. I felt like it took FOREVER for them to take me to meet you. But then, my nurse said we were free to go. They took me through the hospital and into the NICU. Bed 23. I held your hand and told you how much I loved you. I felt like I only saw you for 2 seconds, though I’m sure it was a lot longer. Then it was time to go to my room to recover.
I slept and pumped and slept and pumped and slept and pumped. Pumping was one thing I felt I had control over. Each day I strived to pump as much as possible so you could grow big and strong. I remember the first time I wanted to see you in the NICU. I made daddy take the wheelchair and I pushed it (empty) all the way from my room to the NICU. Let me tell you- it wasn’t easy, and it was pretty far! I was determined to see you though. Daddy went to the NICU at all hours of the day to bring you milk for you to eat. He saw you more than I did and I got jealous. It’s hard trying to recover so a mom can be her best for her baby all while worrying about her baby! You were a good girl though, and your nurses took very good care of you.
One night we went to the NICU and I cried after I saw you. You had been crying (which I thought was so cute and recorded- the one and only time I heard your sweet voice before you were intubated), and I felt awful leaving you. I cried in the hallway and when the nurses saw me, I asked them to make your space more home-like. So, Nurse Kelsie drew your name out in paint and made gorgeous animals to hang up as well. It made me feel better even though it was something so silly.
I also got to help do little things with you and each little thing was so amazing. I didn’t care that my stomach felt like it was going to rip out of my body, all I cared about was standing over that Giraffe bed, changing your diaper and giving you a sponge bath with Nurse Monica. It was the HIGHLIGHT of my day. It kept me going.
After a few days, I was discharged. Sweet pea, I want you to know how AWFUL it was to leave the hospital without you. It was SO painful. My heart was ripped out of me and it NEVER was easy to leave you at the hospital. I had heard it was incredibly important for me to recover and take care of my mental health, so I always went home at night, but trust me, I never liked it. I even remember the one time that you were unhappy when we left. I sobbed in the elevator and told your daddy I felt ridiculous for wanting to go back to make sure you were ok even though I knew your nurse was taking good care of you. I wouldn’t let him leave the parking lot when we got to the car, and he walked all the way back up to the NICU, took video of you happy as could be again, and then I felt like I was going to be somewhat ok leaving you for the evening. We would stay SO late to be with you to do your nightly “hands on” time. We would want to do any little thing possible- diaper changes, temperature checks, blanket changes, sponge baths, probe changes…whatever we could do so you would know we loved and cared for you. We spent many nights driving back incredibly late because we could never tear ourselves away from your adorable self.
Do you remember the first time I held you? Oh, I do. I felt like the days beforehand were SO LONG. It wasn’t fair that I didn’t get to hold you right away, but trust me when I say that you were worth the wait. I will FOREVER treasure our moment together. The second that Nurse Monica gave you to me- I was in heaven. Yeah, I cried, but it’s because I had never seen someone more precious in my life. My dream of holding you finally came true! It was magical to me. We spent many days after that just snuggling for hours. I’d have to pee and would hold it for 4 or 5 hours JUST so I could hold you. I knew that if I put you down, it’d have to be for the rest of the day because you had so many cords, so I always held you as long as we both could possibly stand. Remember Nurse Amanda changing your diaper on you while you were laying on me? That’s pretty impressive, huh?
Days turned into weeks. Weeks turned into months. We spent 6 months in NICU. You had 6 surgeries. We spent Halloween (as the fawn, doe, and hunter- remember?), Thanksgiving, Christmas, New Year, and Valentine’s Day in the NICU. Holidays were the worst. THE WORST. Especially Christmas. We hadn’t anticipated you being at the hospital so long. We hadn’t anticipated PDA surgery on your heart. Or the trach. Or the g button. Or the craniotomy. All we had anticipated for was the SCT. I tried my hardest to make the holidays the best. We would decorate and bring the holiday to you. We would take pictures, dress up…the whole nine yards. One of your neonatologists told me it didn’t matter that you weren’t home yet, because we had made a home for you in the hospital. After all, home is where you are, right? You were the one of the few babies in the NICU with a halloween costume, and the only one with a Christmas tree. You also had the most adorable Valentine’s onesie and brought your nurses lots of chocolate since they had to work. We even went to Texas Children’s again because we thought you would need a heart procedure. You got sick there and spent 9 days with us in Houston. We had a lot that we overcame in those 6 months. A LOT. Those 6 surgeries that came with complications, withdrawals, recovery, stress, and more. Still, you overcame, and with mountains of prayers, you pulled through EVERY surgery and complication.
Then, came discharge. We had an “overnight” weekend in a room at the hospital to show everyone we could take care of you on our own. It was AMAZING. We had a few things go wrong (like having to call everyone because you were clamping down and we had no idea why), but mostly it was so great. I was overjoyed. We laid in bed and snuggled with you. We camped out in our little room eating pizza, watching tv, and just snuggling the mess out of you. It was like a piece of heaven. Something SO simple as snuggling with you in bed was finally attainable. Something that most moms get to do the day their baby is born, but we had to wait until you were almost 6 months old. It was magical though and I thanked the Lord for bringing us so far. I’d never felt so amazing and ready to take you home!
Once we got you home though, things got scary. You cried a lot because of the new environment and because your nursing was unreliable. You cried because you had many appointments and it was cold outside, but you hated to be bundled. You get hot easily. Still, I made the best of it and we would play and play and play all day. We worked on therapy exercises and would read books. We would snuggle and you would pet Pearl. We had a blast despite your breathing problems. I was on cloud 9. I was elated. Yet through it all, I knew something wasn’t right. After 6 days of having you home, we took you back to the hospital. That story- I’ll share with you another day…
Going to the hospital was tough. Daddy was working so I had to take you by myself in the ambulance. You couldn’t go back into the NICU so we took you to the PICU. It was familiar, yet different. We were told you’d be there overnight or so, but after sleeping in your hospital room for a week, we realized you’d be there a lot longer. 4 months to be exact. We spent Easter, Mother’s Day, Father’s Day, and Memorial Day in the hospital. This time it seemed a little easier because we knew the drill. Child Life was amazing and always made sure we had things to craft with or the Easter Bunny to take pictures with. They were amazing. While in the PICU we finally got the diagnosis as to why you needed your trach other than “respiratory failure”- you had bronchomalacia.
Bronchomalacia! It made perfect sense! When you cried your airways would slam down and you wouldn’t be able to breathe. It was why you had so much trouble at home! Praise the Lord we finally had a diagnosis! We worked very hard to get you to a place of comfort, of not being sick, of not needing a ton of meds, and after those 4 months…WE WERE TAKING YOU HOME AGAIN! At the end of June, on June 22nd to be exact, we took you home FOR GOOD.
It took forever to get you out of that hospital. Daddy and I were incredibly antsy and irritable because we JUST wanted to grab you and take you home, but we had to deal with paperwork, medicines, and more. Finally, around 3 pm, we went downstairs with Nurse Liz, and put you in the car seat with all your gear. We drove home as a family and I cried happy tears. Do you know how long we waited for you to come home? TEN MONTHS, LITTLE GIRL! You have been home now for over 2 months. You’ve gotten sick twice since you’ve been home, but you’ve managed to stay out of the hospital. You’ve had countless doctor appointments, many therapy sessions, and more, but you have been AMAZING and have done so well.
Addie, you are one heck of a fighter. You are SO dang strong. You put the strongest men in the world to shame because you are stronger than them! You know why? Because the Lord your God watches over you. He protects you. He loves you and fights for you. He has sent an amazingly strong team of angels to watch over you. You know those angels- They’re the Neonatologists, the Intentivists, the Nurse Practitioners, the Residents, they’re the Social Workers and Case Managers. They’re Nurses Monica, Patricia, Kelsie, Amanda, Devon, Megan, Mandi, Megan, Emily, Stephanie, Julie, Gracita, Trevor, Liz, Carin, Courtney. They’re RTs Julie, Erin, Donna, Alissa, Karen, Rosali, Wendi, Brian, and Wendy. (Gosh I’m SURE I forgot people- I’m sorry!) You have one AMAZING team of angels that had the opportunity to watch you, take care of you, and love on you. Guess what? They still do!
I know God brought you into this world for a reason- to spread His word. Did you know that you are touching hundreds of thousands of lives? You have over 52 THOUSAND readers on Facebook that await for your pictures JUST so they can pray for you. You have almost 20 THOUSAND on Instagram who LOVE seeing your face and who pray for you daily as well. You have SO MANY people that love you. They are your angels as well. They are your prayer warriors. You know how I know that they love you too? Because you got SO many birthday cards from them and each person wrote the most incredibly touching words. Words of love. Words of hope. Words of encouragement. Words of praise. They’ve been watching you. They’re praying for you. They were sent from the Lord to watch over our family.
This year has been tough. I know it’s been just as tough (if not more) on you, than it has on us. Yet, you show God’s love and mercy each and every day through every single thing you do. You give us reasons to stay positive, to have hope, and to rely on Jesus. You have made me stronger in my faith. You have shown me what unconditional love is. You have done SO much in your first year of life. If this is just your first year- the world is going to have to watch out because we know God has HUGE things in store for you and your life.
You are my everything. I am so proud of you. Thank you for being my daughter and allowing me to be your voice. I hope I never let you down. Now, do me a favor- let’s make your second year WAY less dramatic, ok?
I LOVE YOU FOREVER AND ALWAYS,