In the next few days I’m going to update everyone on what’s been happening with Max’s belly, and our adventures in trying to figure out what has been causing him so much pain. As you’ll see, we’re going back in time a little bit, starting with something I wrote the day after his procedure at Stanford:
As I write this, I am waiting to hear your little cry as you wake up from your mini-nap. Since your surgery yesterday your voice has been scratchy and hoarse when you cry. Like your normal sounds, but with the volume turned down low and the needle doing a little dance across your record.
I still don’t have enough words to describe the day we had yesterday. But this morning when you snuggled into my lap at music class, and the teacher said “Max, I’m SO glad you’re here and that you’re feeling better!”, I knew that I needed to write what the tears couldn’t say.
I remember you in your little gown, so warm and soft in my arms as we carried you through the hospital for your surgery. Your yellow hospital pants were way too big, and they kept unrolling around your ankles, and finally Daddy just took them off of you so that you wouldn’t trip. Because you kept walking/running/climbing all around the pre-op area. Because that’s who you are, my active curious boy. You had two ID bracelets on your ankles, and Mommy and Daddy each wore one on our wrists. I told you that it meant we all belonged to each other. We do. And I told you that it was just like when you were born, and you and Mommy and Daddy each had a bracelet that said we were a family. “Same, Same” I said. Just like we used to say to Aunt Katie when she was small. It reminded me again and again that we were in this together. Our little family curled around our boy, holding him up and bringing him in.
Yesterday before they started your IV they gave you some medicine to help you feel calm. Of course, with your energy it only made you go in slow motion, and we had to smile as we watched you continue to try to climb off the bed and walk around. You still waved to all of the nurses and said “Hi!”. And they were so sweet and let you sit on their laps and play with their phones and computers! Then we walked you to where they were going to do your surgery, and we laid you down on the great big bed with George. Daddy had his hands on your head and face stroking you softly (and letting you play with his hat!) while Mommy was by your side holding your hand and touching your face. They finally got your IV in your little foot (sorry, you clearly have Mommy’s bad veins!), and then they gave you the oxygen mask to play with. I am SO glad that they let us stay with you while you fell asleep. I didn’t want to leave your side, and Daddy said later that it was the hardest part of the whole day.
I cried in Daddy’s arms when we got to the waiting room. I just kept looking at the door every time it opened and closed, praying that anyone who walked through would have good news. Waiting and wondering, hoping that you were ok. You are a part of my heart. It hurts deep down in the core of me when I am away from you. When I have to imagine your big full lips and their “fishy pout”, or the way that you wiggle into my side when you’re sleeping.
And finally, the door opened and the doctor came in. He sat down with us and showed us some pictures of your belly, and explained that you had some bumps in there that were making you feel bad.
My heart felt tight, and relieved, all at the same time. Of course I don’t want you to be sick. But you have been hurting for so many months without any answers from the doctors. I know you feel terrible when you throw up. The helpless, scared look that you get when you can’t stop heaving. I don’t want you to feel that way anymore. I don’t want you to wake up from a tiny nap, exhausted and upset, struggling to go back to sleep. I want you to enjoy food, and to be able to eat with us and not feel bad or frustrated. I want you to be able to get sad sometimes, and to not start choking every time you feel like you need to cry. So for these reasons, I was relieved that we were finally starting to get some answers for you.
As we were talking to the doctor, the nurses wheeled you out of the OR and headed out the door to recovery. Daddy bolted towards you and got a quick peek, and I saw you from a bit further away, curled up on your side under lots of blankets, sound asleep. I guess we weren’t supposed to go with you yet. So they sent us to another waiting area where we were to wait until they said we could come in. That didn’t go so well 🙂 Daddy used his words when Mommy couldn’t find any. He marched right over to the person in charge and let them know that we HAD to be there when you woke up. I love your Daddy. Especially because he shows us how much he loves us with actions, every day. At one point I decided that we were going to stand in front of the nurse’s desk until she let us go see you. He heh. I think we were making her uncomfortable, because she did call your recovery nurse again to ask if it was time yet. I realized that I was standing there rocking. Side to side. Just like I do when I’m holding you.
When we finally were walked back to the recovery area, I heard your hoarse little cough/cry before we even came around the corner. “That’s Max” I said to Daddy. We know all of your sounds, every breath, every little noise. The nurses were helping you to sit up, and we swooped in immediately and grabbed you. They let us hold you, with all of your little wires and things sticking out. You immediately grabbed on to me and knew who I was, but you were PISSED. We could tell you felt like crap, our poor baby. They let me give you a little bottle of sugar water, and you got quiet in my arms as I cradled you and fed you from the tiny bottle. Just like in the hospital when you were born. Except this time your legs dangled over my arm. Your eyes closed and you nestled in, but as soon as the bottle was empty you were screaming again. Daddy and I alternated holding you, singing to you, trying to make you laugh. I whispered your favorite songs in your ear, and repeated the words over and over that I like to sing to you in our quiet times (“I love you I love you, I love you I do”). Finally, you took a bottle of milk and about half way through, something changed behind your eyes. You were back. The fog had lifted and you were starting to feel better. You looked at me like it was for the first time, like you had just realized that you were Max and I was Mommy. And then Daddy gave you a big hug, and a few minutes later you looked over his shoulder and started greeting the nurses with your charming smile. “Hi!” you said, and they laughed because you were clearly feeling better!
Max, I am so blessed to be your Mommy. Of course, there is something special about all babies, but there is something extraordinary about you. You were so brave yesterday, and so loving and sweet to everyone who was there to help you. Your bright smile and curious eyes charmed all of the doctors and nurses, and it made me so proud that you are so aware and so full of light. I am so sorry that your belly has hurt you for so long. I am so sorry that we went to doctors who didn’t understand. I am so sorry that they had to poke you and mess with you yesterday, and that when you woke up you were scared. I am so sorry baby.
But I promise you that we will help you get better. We will not stop figuring out the answers until you feel great again. Until you can sleep peacefully and eat normally. We will be your warriors, your bodyguards, your army, forever. Thanks for being such a trooper, and for letting your smile shine through all of the stuff you’ve had to endure.
We love you more than the moon and the stars, and we are so thankful for the amazing team that took care of you yesterday. You are surrounded by love and strength from so many family and friends too, and we appreciate them every step of the way. Their kind words, emails, texts, dinners, and phone calls have held us up and kept us moving forward.
We love you, and we will fight for you,
Mommy (and Daddy too!)