Reality is settling in a bit and my hormones are crashing in my postpartum state which is a perfect recipe for emotional moments. We’re noticing little things about Mason as well. Want some more details? You can keep reading but please remember this is my journal of our spina bifida journey and so it’s not going to be prettied up and company ready – it’s going to be real.
First overwhelming moment of the day: Making a whole host of doctor’s appointments and realizing just how insane the next 6 weeks will be. Things will slow down eventually but in the next 6 weeks we have:
- Nurse visits from Children’s – they come to me (hooray!) and check Mason over and answer questions we have. I think we’ll get weekly visits for a month.
- Pediatrician appointments – first checkup this week, then we hope to schedule Mason’s circumcision for next week. More visits as needed(plus any visits my other kids may need in the next 6 weeks). Travel time is only 10 minutes each way.
- Ortho visits for Mason’s clubfeet – beginning this Friday we’ll go into the big city (travel time 1 hour each way) to get new casts put on Mason. We’ll go every Friday for 6 weeks, changing the casts every week. He’ll have casts from hips to toes. Then we’ll see if more needs done.
- Myelomeningocele Clinic Days – These are Fridays and the first is next week. We’ll have more, I’m not sure the frequency in the beginning while we get things established. Mason will meet with up to 10 different specialties at these clinics. Drive time: 1 hour each way. Expected visit length: 3 hours each time. Combining this with the casting appointments on the same days in the same town makes for what will probably be 7 hour days – yikes.
- Head Ultrasound – This is done next Friday too, right after Myelo clinic and before the Ortho appointment. It’s needed for the next appointment I’ll list.
- Neurosurgeon checkup – The Tuesday after our first Myelo clinic we’ll meet with Dr. J for a thorough check on the back and shunt incision sites, review the head ultrasound, etc. Drive time: 1 hour each way.
- My C-Section check up – Drive time 10 minutes each way. This is my 6 week checkup, I’m assuming it will be easy. I get to do this with my midwife.
- Other random appointments like a phone interview with Social Security Disability – Mason may qualify due to his SB.
Do you see what I mean about overwhelming? The first few visits will be easier than the later ones because my MIL will be visiting and she’s keeping the 6 older kids home for me. Later appointments I’ll have to bring all the kids along sometimes. While local appointments make that doable, I just shudder to think of a 5-7 hour Myleo clinic/Ortho cast change/2 hour drive time visit with 7 children in tow! My children are usually great at these sorts of visits but let’s be real – seven children age 10 and under are going to have a hard time being in doctor’s visits for that long on a single day. Not to mention I’ll have to find a way to pack food, diapers, and survival things for them all. Oh, and I’m still recovering from a c-section for all of these and so I’m not ‘supposed’ to lift anything like my 1 year old, 2 year old, plus a diaper bag, cooler of food, and baby in a carseat. (oops! Did you just hear my semi-maniacal laughter?)
My husband won’t be able to take time off for these visits most likely, we wiped out his vacation time with the NICU stay and vacation doesn’t roll over until April. I do have other family who might be able to help out watching kids but they need to work too and I feel GUILTY even thinking about asking for help with so many appointments. We have some friends that may be able to help for the local appointments, but again, mommy-guilt is stalking me.
I’ve cried over it because I feel so inadequate to do all this right now. I hate that I’m still recovering from my own surgery and can’t do everything myself. I’m sure God is working on humbling me and teaching me to accept help from others. I’m not very good at that, as a matter of fact I’m very very bad at it.
I’ve cried over random things today too, including for no reason at all. At least I know it’s normal and that in a few weeks when my hormones level out that will stop. It’s been this way with each of my babies so I’m finally able to laugh about it and it doesn’t worry my husband quite so much. He understands I really am fine.
On to things we’re noticing about Mason:
This is going to be a small and jumbled list. We’ve waited so long for him to arrive and now we’re starting to find breadcrumbs to answer parts of the many questions we’ve had about what he’ll be like and what his SB will affect. We’ve got lots and lots more to learn, but here are things we’ve noticed so far:
- He’s a sweet, mellow spirit. He is calm most of the time with these dark, wide eyes that melt your heart. He’s not the fussy type so long as his diaper is clean and his belly full. Feeling his sweet spirit I just wish I could introduce him to every doctor who pushes for and every parent that considers abortion when they are given a diagnosis of Spina bifida. More than 60% choose abortion. I can’t imagine what life would be like without Mason and he is worth everything that comes along with the SB. How can people not see that?
- He’s got very little muscle tone in his anus. He poops often. His anus isn’t drawn into a nice, tight, closed spot, it’s kind of open. Which of course leads to questions about what that will mean long-term. For every answer we get two more questions!
- Mason’s got use of his hips. We don’t know to what degree or how strong his muscles will be but for now he pulls up/in his legs well during diaper changes. Mason’s got some sensation in his diaper area. He notices when we wipe him, notices (and doesn’t like) when we cath him. He seems to have some sensation in thighs. He doesn’t like being washed there.He doesn’t seem to feel much in calves or feet. Tickle him there and you get no reaction. Toes don’t really move, he doesn’t notice when you touch them. What will this all mean for movement/crawling/walking down the road? It’s anyone’s guess!
- Mason’s pretty predictable already. He wakes every 2.5 – 3 hours to eat, get a diaper change, and snuggle. In the afternoon or early evening he has a longer sleep, about 4 hours or so. Ideally this will shift to night time sleep eventually, but for now we’re just grateful he’s sleeping so well at any point in the day!
- He loves to be held. What baby doesn’t? And at our house there are plenty of arms to hold him. Of course, it reminds me of something I heard a few of the nurses say at the NICU about one of the babies who had been there for a long time. They said she was spoiled, that her parents came in often and held her the whole time they were there. She was generally unhappy if she wasn’t being held. Needless to say, I told those nurses that it’s impossible to spoil a baby or hold them too much. Yes, I understand that in their job it isn’t possible to spend all their time holding the baby because they typically have more than one baby they’re responsible for during their shift. But God designed babies to need held and touched – the more the better!
- That’s exactly what we did with Mason in the NICU – awake or asleep he was generally in my arms or my husband’s. Their little spirits can feel your love and comfort even when they’re sleeping in your arms. Here at home you’ll often find Mason asleep on my chest or in daddy’s arms until we need to cook a meal. I’ve not tried my Moby Wrap yet – I need to let his back finish healing first – but once we start that Mason won’t even have to be put down to cook. I’ve learned my babies are more content if they get plenty of time being held. Then they peacefully spend some time out of arms when we need them to.
- With that said, Mason has also learned to be content in his swing for a nap (it’s not turned on yet, just holding him), and he sleeps in his crib, not our bed. We’ve had co-sleepers in our bed and crib sleepers over the years. Each child has been different and Mason is happy sleeping in his crib. As for the swing, it’s not safe to put Mason on the floor with all the little ones running around at my house, so the swing is a safe spot for those moments when I need to put him down if nobody else wants to hold him. (Makayla has been loving holding Mason too, so there are no shortage of capable arms!)
Well, my computer time is up and Mason is stirring. Bye!