Monday, January 23, 2012

Random Lists–Overwhelming and Noticing

100_7995Reality 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:

  1. 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?
  2. 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!
  3. 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!
  4. 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!
  5. 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! 
  6. 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.
  7. 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!


  1. This IS a lot, Tristan. I would be very overwhelmed and weepy, too. I am thankful you can blog your way through some of this, and that you know God is in control and working on you.

    Praying for you, friend.

  2. I wish I was closer and could help out with more than a comment on your blog. You and Mason are in our prayers!

  3. Aw, Tristan, one day at a time. It really IS a lot on your plate in the next few weeks. Our babe is 3 weeks old right now, but I've already had my moments of feeling overwhelmed too... and only 5 of the 8 are under 10 yrs old, and this baby is perfectly healthy so none of those extra appointments you have to deal with either. Be very patient with yourself and bring your cares to God... He can do wonders for a mommy's coping abilities.

    I loved reading about how much lovin' you are pouring on this little blessing of yours. When our 3rd child was in the hospital NICU as a newborn, I was also at his bedside as much as possible... but I saw many parents that spent most of their time in the waiting room while their little ones were crying in the NICU. It made me so sad. I think the sick babies are the ones that need the most cuddling and I think that it helps them to heal faster and grow better too. You are a wonderful mommy.

    Praying for you all,
    Christine (Ontario)

  4. Tristan,
    I think you are doing a fabulous job with everything! You are cetainly allowed to feel overwhelmed and weepy. You have a lot on your plate. Please don't be shy about asking for help with all your appointments-- Even if someone can watch a couple of your younger ones on those long appt days--people want to help. I remember those early days after my boys surgeries and my heart goes out to you. Continued prayers.

  5. Tristan, I really feel for you right now and what you wrote is very overwhelming especially after just having your 7th baby. Please do whatever you can to have someone help you. Surely someone or several someones at church can help watch your children on those busy Friday's. Is there a way you can even split the children up with several different families? Surely they would understand you need the help. Also, another idea if you have to take some children, see if you can have someone watch 4 of the children and and take your oldest and Caleb with you, so she can watch after Caleb. Then promise her something special for being such a big helper on those days. I just keep hoping you have a good support group through church. In our ward they send around sign up sheets for stuff like this. We help with meals, ladies on bedrest, cleaning, etc. Oh, one more idea, maybe have several people help on the busy Friday's, but split them up into shifts, like Helper #1 from 8-11am, helper #2 from 11-1pm, and so on. Please get some help, you really need to focus on healing for yourself and Mason and this really crazy time will pass. I know I am throwing lots of ideas out there and I hope not to overwhelm you more :) Please try to take care of yourself too, I know it's hard. Just know we are praying for you and your family!

    1. this is such great advice and written so much better than i could say it. one thing to add: tristan, you know G-d brought mason in your life for a purpose/reason. Well, that is true for ALL the people in your life. It is okay to rely on others to help you through this busy transition. Also, you can remember that you are giving people the opportunity to serve which is also a blessing in your faith (right?). For all you know, your asking for help is part of the "lessons" G-d/Mason is teaching you at this season of life.
      (It's also like when you receive a compliment--accept it graciously and don't try to brush it off.)
      Soooo....ask for and allow yourself and your family to receive help in as many ways as needed. NO GUILT.
      as always, with warmest regards,
      stacey in las vegas

  6. Wow. You have quite a list. Thank you for sharing it all with us. And praying for every little piece on it! Wish I lived closer so I could help with the appointments, but my prayers will have to do. :D

  7. One day at a time :) Someday this will all be a (crazy) memory of Mason's first year. He is doing so well that it's hard not to see Heavenly Father's hand in all of this. You're going to get through it, even if you are emotional and have to shed some tears through it! Call me to watch the kids while you are at the appointments. Don't feel guilty even if it's all day. I really, really, really want to help, and I know a bunch of other people do, too. Dave's back to 12+ hour days with the musical, so we pretty much just hang out at do whatever we want. Call me!

  8. You need help! And people need the blessings of helping you! If I were a "real" friend instead of a "virtual" one, I would be honored to watch your kids for you and help you get through all of those doctor's appointments. People at church/family/neighbors/homeschool friends--I'm sure you have more willing arms than you realize!!!

    You're in my prayers.

  9. You are doing a fantastic job. I love your new family picture too. Recently I found the folder that I kept from Kason's sick days. Appts. discharge papers, etc. And I was overwhelmed to tears. Suddenly the thoughts and feelings all came rushing back at once and I couldn't believe I lived like that for 18 months. But joy does come in the morning. And it won't be like "this" forever. I remember after he was better, I coudln't visit a hospital for a year without feeling sick to my stomach and anxious.

  10. I agree with Erin! It's not a problem at all for us to help you! Both my kids are at school all day and I'm totally available to watch your children...I can even come to you!!! You can take a few of them with you to appts, or they can all stay and play with me! I know it's hard for you to not be able to do everything (believe me, we're a lot alike in that!)...but when I was in a similar situation it was so humbling to me to see such wonderful friends who were willing to help. I also noticed that I was giving them a gift by being able to serve me. It was a hard and wonderful lesson, but it made me love them so much. You're not alone. There are so many people ready and excited to help you. Remember the talk you quoted a few weeks ago on your blog about the daily manna. Just concentrate on one day at a time...ask for help when you need it...and keep enjoying your little ones and the special moments. I love you and am on-call for anything you need!

  11. Brutal honesty coming: It is unfair to your children to make them endure repeated all day doctor visits because you are unwilling to ask for/receive help. Life as a special needs mom is a marathon, not a sprint. Ask for help...and take it. Call your Visiting Teachers, or Home Teachers, or Relief Society President...give THEM the dates you need help, and have THEM schedule the help you need. You will not be able to be the pillar of strength you will need to be for your family in the coming years if you use up all of your reserves now. I know there are MANY people in your life that are praying for ways to help you. LET THEM! And you, and Mason, and they will all be blessed for it! If you allow the ward to serve you as you serve Mason, the entire ward will become closer. It happened with us.

  12. Oh Tristan, I wish I lived closer to you. My kids would love having the playmates! I will be praying for your family and that you get everything figured out and that it will leave you at peace. The Lord provides for our needs...which may be through other people. I just love getting to know your sweet family through your blog.

  13. What we do is try and keep a bag packed for all docotr's appointments. I keep things in there that they are NOT allowed to play with at other times. The best thing I've found for Dr. appointments is the giant sticker books. She can get in a few pages at each visit. It is quick to put away when you are called back and it lasts a long time. I'm sure DVD players and the like would work to. It could be an adventure. Lunch in the car, maybe a close F. Trip afterward. We also started a sticker book. My DD gets THAT many stickers so kids can enjoy that as well.

    Perhaps you could ask another homeschooled child (maybe one in High school) to come with you for appoinments. Maybe your oldest could watch two and the rest come back with you. It will be challenging. Perhaps ladies from church could take turns coming over to watch the kids?

    However, what I do know is that you ARE amazing and will no doubt find a wonderful way to handle it. Can't wait to read how you do it.

    Cry when you need to and just take one day at a time. It does seems to get eaiser. Perhaps we just adjust better. Hang in there. Your still in our prayers.

  14. "More than 60% choose abortion." wow, that makes me so sad. I can't imagine Z not being here.


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