yesterday was another long emotional day for joe, me and baby goldfish. yesterday we had our meeting with the pediatric surgeon that would be doing the surgery on goldfish once he/she is here. it was a very surreal experience because i think we were both kind of hoping that we would go there and it would have all been a mistake. but bit by bit we are accepting the reality and comforted by everyones well wishes and prayers. there is just so much unknown and that is what makes me so uneasy about the whole thing.
so here is what we do know. yesterday we went to the specialist center in downtown and the meeting pretty much confirmed what we were already told at our first appointment when they actually found the heart defect. we just received a lot of clarification on how this is all (hopefully) going to go down.
once goldfish is born he/she will have a full in depth heart scan to make sure everything is ok. we know of the ASVD condition but there really isn’t a way to tell of other complications until baby is here. pending there are no other complications baby will hang out for a few days to be monitored before being sent home.
once we go home our goal is to get to between 3 – 6 months of age before the corrective surgery happens. we were relieved to find out in a way that it’s not an urgent thing. ex baby won’t just stop breathing in the middle of the night. the decline will be monitored by feeding and growth and once our cardiologist determines that it’s to the point where we need to get the surgery scheduled they will take it to the surgeon team to get the final approval and jr.’s surgery will get put on the calendar.
the surgery will be an all day deal with the actual surgery taking about 4 – 5 hours assuming all goes according to plan. baby will need to be on a ventilator for about 24 hours and then in the hospital for about a week. as much as it sucks that we can’t just go home, i am so grateful for the attention that the doctors and nurses are giving to baby and baby’s health.
the surgeon we met with yesterday is top notch and it was a relief to see how smart this man was and how totally capable he is to be doing this surgery. if all goes according to plan this should be a one time surgery and it will be the only one ever needed. we are so so so praying that the rest of baby’s heart is ok. (and rest of baby for that matter). goldfish does have a smaller than normal aorta which from what i understood yesterday if there is an issue that will cause (most likely) the issue to be on the left side of the heart.
i’m pretty proud of ourselves for holding it together yesterday. especially when we got into the nitty gritty of other complications and what would happen if there are other abnormal things with goldfish’s heart. the only time i absolutely couldn’t hold it together was when we were talking about the actual surgery. after post op we won’t be able to see baby for about another 1-2 hours. in my head i was like if you fricken think for one second you are going to keep me away that long clearly you haven’t gotten a good read on me yet. i’m crazy. honestly, i try to keep busy because when i let my mind be quiet for too long right now i just think of that shitty day coming our way and.. i just can’t think about that right now.
the other time i got a little weepy was when our social worker presented us with this kit from the families with other pediatric congenital heart issues. it was such a nice comfort to know we are not alone. inside the kit (which perfectly holds all the papers we get) are things i would never think of. a file for business cards, extra pens, note books, helpline numbers, a packing list for surgery day etc. that teeny tiny little beanie had onsie. (made me bawl last night). however the coolest thing are these red bracelets we received. these are to identify other heart parents in the hospital. so if we are there for surgery, check ups, appts etc we can identify each other which i thought was pretty cool.
i have no doubts that whatever comes our way with this we will work through it. it’s just so scary. the doctor said on a scale of low – high severity we are right in the middle. and as much as it sucks i pray pray pray for those parents who are getting the high end of the spectrum. it’s so hard to want to protect someone that isn’t even here yet. it’s been hard lately to even focus on the actual moment of being pregnant. right now little goldfish is safe and growing and living the good life inside but the idea that once it’s breathing in earthly air things start to fall apart absolutely sucks. i’m sad that once we deliver goldfish we are going to immediately be awaiting test results and not completely being able to experience this first birth like we should. i don’t mean to sound like i’m throwing myself a pitty party. i’m just being honest with you all what this feels like. i’m sure others who have gone through this have felt the same emotions. it just really sucks. right now i’m just praying that joe and i find some peace in this and enjoy the last few weeks of life just being the two of us and savoring the moments of growing goldfish.
thank you all so much for your cards, emails, texts, comments and other words of encouragement but most of all your prayers. words cannot express our gratitude for you.
i hope you all have a wonderful weekend. joe and i decided to be hermits this weekend and work around our farm and gardens and just take it easy. happy friday.0