On December 15 of 2009 I gave birth to our third wonderful baby. He was an extremely sleepy guy which was odd to me my other babes came out wanting to eat. I got him to breastfeed maybe twice and it wasn't quite right. My mom radar was going off in a major way. So I ask the nurses and doctors and get the response "Some babies have a hard sleep pattern" numerous times from multiple people. I keep at it He's not right. So the next morning around 4 am I send him to the nursery which I don't normally do. He wouldn't calm down , not that he was crying he was just squirmy and restless. ( I find out later this was him starting to struggle to breathe) Again Weird but I'm tired so fine. I get woken up at 5 am they have taken him to the NICU they think he has gotten breast milk into his lungs, my heart drops. I get up and call Big Daddy who has the other two kids at home so he can take our lego head to kindergarden and then head back over to see us. He says ok and starts getting ready. I get down to the NICU where I have to scrub in like a doctor weird thing to do?? And I go back and see him as we are walking they tell me they aren't sure what is wrong with him but it's not aspiration(inhaling fluid into your lungs) My heart sinks again. I go in and he is intubated( breathing tube) My heart breaks.
There are people everywhere nurses and doctors. One in particular I recognize from somewhere, she is talking to what I can now assume are students and looking at a moving x ray ( It was an echo of his heart) They still don't know what's up so they send me back to my room after a while and I call Big Daddy again he chokes up and is on his way this is now around 7 ish so he drops off our lego head and comes. I head back down to the NICU and wait. I walk in the babies room and some guy who looks like Santa says to me "Has anyone told you what's going on?" I say no He says It's his heart and I lose it quietly I am thinking my baby is going to die. It was a hard moment I'm crying writing this and it was a year ago.
So Big Daddy and little Sassy arrive we both need to go back and talk about the baby We leave her with a kind nurse who we don't know because kids can't go into the NICU. So Big Daddy and I hold hands and go back and see our very sick little boy. Big daddy breaks, it is harder for me to see him cry. Dr. Walker introduces herself and we go to a room to talk. We hear what is wrong with his heart, Transposition of the great arteries, interrupted aeortic arch, VSD, ASD, pulmonary stenosis All of this is way over my head at the time although she has pictures I think I'm in too much shock to get it. We hear how he needs heart surgery and they can't do it here in Boise. He needs to go somewhere special are options are Seattle, Utah or Portland. Seattle is my choice I grew up there, well just north in Snohomish so I know the area. My mom and dad are there. We have a plan and i think its surgery that day. ( Surgery doesn't actually happen until day 7 )
So I head back up to my room to get my stuff together the baby and I are going on a medical flight to Seattle now! I get up there and the nurses want to discharge me What? I have to go is about all I can say my baby is sick and I need to go. I am in a hurry and they don't get it. I have to get prescriptions that I don't care about and sign papers and all stuff I don't have time for. I'm sure that those nurses have seen a crazy mama before so they are nice and calm. I do have the presence of mind to call my sons kindergarden and tell them what is going on. They are so wonderful and take care of him until Big Daddy can get there they feed him lunch they are just above and beyond. I also call my mom who is flying in the next day or so and say Mom don't cry keep it together you can't cry right now the baby is sick he needs major heart surgery we are coming to Children's in Seattle can you come? She of course says yes because she's a great mom I sure love her.
There is a social worker and to this day i don't know her name due to the fog I was in she sets us up with a place to stay ronald mcdonald house I have no idea at this point what it is or why I need it but i call them anyway Luckily they have room.A room that was home for three longs months. Being that it is 9 days before christmas and My mom and brother are coming here for christmas Ther is no extra money for Big Daddy to drive there let alone fly so the social worker gives him gas cards she is a gem and I will find her card someday when I have time to go thruok we are on track to get him fixed. They also give me some nausea med that sort knocks me out for the flight Its a tiny plane the baby, me, those two nurses and the pilot it was bumpy and TINY!!!
We hit Sea-tac, again in the ambulance and then into the ER. We walk for a ways and then there are about 15 nurses and docs swarming my baby as I lean on the door and just watch and try and listen and make sense of all their medical talk. The docs in Seattle are saying they wouldn't have him sedated that much he's ok to be awake It sounded like they messed up I'm hoping they didn't. A NICU doctor notices me and asks if I'm mom asks if i want a chair I say no I'm fine he gets me one anyway( Love him) He holds my hand and tells me he will be ok we are in the right place. I remember holding this strangers hand for all it was worth and he just sat there with me for a while. What a comfort to have a hand to hold. So they get him set up and I can finally go in and sit with him he looks so little and he is not even two days old.
They tell me he can't breast feed they don't want anything in his belly before surgery. I breastfed my first two for the first year. They tell me I can pump for him. Weird so Weird to me! They bring me a pump like I'm supposed to know what to do with it. Pumping is AWFUL and does not go well at all. If I knew this would be important in my life I would have gotten a job in the designing of pumps and the leading of using one They teach it all wrong. I eventually figure it out but stress of a very sick little boy does not make it easy.
That had to be the longest day of my life. I was so exhausted emotionally and physically I am amazed looking back at how long I lasted. The Doctors then started pouring in I remember asking a million questions no one would tell me yes he will make, it was always we will have to see. Patience not a virtue I was born with is now mine.My mom is there with me now and we cry hard for a min then we get it together and are pretty OK for the rest of the time. I remember the Doctor who told me if I had more kids they would most likely have a broken heart too. I told Big Daddy no more kids! I had wanted 5 or 6, there went that plan I wouldn't do this to another kid. I keep asking questions the same ones over and over until I have some kind of grasp on it all it is a tentative one but there. I remember meeting the head cardiologist Mr McQuinn. He is who they call when they can not figure out what is wrong with your kid he's probably the most intelligent person i have ever met in my life. That first night I remember him, but I have zero recollection of what he said my eyes were crossing. It was time to go sleep for the night
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