Sunday, November 8, 2015
Appointment 2- Ventriculomegaly Post 3
Finally.
Our appointment wasn't until 11:30. That is SO late. We both stayed home. I'd like to say we got a lot accomplished, but we just kind of sat there. We pulled in to the hospital parking lot and I realized I forgot my notebook with 2 weeks of questions that I needed answers to. I was so mad. I sat all morning and couldn't remember my trusted notebook. oh well.
I asked Case what he hoped for. I said I prayed for a "12". But then I felt greedy. So, maybe a 13. I wanted a 12 because a diagnosis went from moderate to mild. And, mild had some really good outcomes. But, praying for a 12 was like asking for too much, getting my hopes up too high. Casey said he just wanted the number to be lower.
We went back with our ultrasound tech and a student from WSU sat in the room as well. I really appreciate the honesty of the techs and the doctors. Don't sugar coat it and tell me scientific answers. That's what helps me. I want numbers. I want real answers.
Myers had his head down. Always. And, he doesn't move. Cute stubborn kid, that one. She tried to measure his head for awhile. Gave up, and came back to it later. His left side is enlarged. And, it's always mostly blocked. His right ventricle measured 8.5. Lower. We were so excited. Or, a normal amount of excited. It's hard to judge excitement when you don't really know what's next. His left side measured 18. She told us she didn't think it was a good measurement and needed to go back, but 18 gets stuck in your head really easy. I'm not really sure what an appropriate response is whilst lying supine on a table with jelly on your belly. I wanted to leave. I wanted to be done. I didn't want to bawl like a crazy, but like there were a few tears. ya know? Every time they measure his head, they try to go somewhere else and tell us something really positive. His femur length was good, which is a good sign actually because that can indicate some other abnormalities. They would point out his cute little lips and note that he doesn't have a cleft palette. His heart looks amazing. In fact, they watched that forever because it's just so perfect. He has plenty of fluid around him. The placenta looks good. It's all good. So, why is there this one thing? We went back to his head. She measured again between a 14-15. That was similar to before and with Myers growing, it's okay for the number to have not shrunk. She was going to show our doctor the images and send the doctor in. Our normal doctor (our normal perinatalogist) was out and his partner would be looking over the images today. She asked if her student could practice ultrasound while she was gone. She also gave us a token souvenir of Myers, and his hand in front of his face. Always. It's actually really cute. And, it's really nice of them to do that.
The student scanned for freaking FOREVER. Oh, I was so done. But I didn't want to be rude. Education is important and it's not like we could do anything while waiting anyways. But oh my gosh. It was like an hour by the time both had scanned. She was so nice and kept asking if I was doing okay. Really. I sound like a brat. But she was nice.
The doctor came in, introduced herself and reported that she wanted to scan. She wanted to do her own because she felt like she could do better. She wanted the ventricle measured more towards the back and all of the ones up to this point were in the middle. She showed us where she was measuring on the right ventricle and explained why she felt it was a better representation of what was really going on. Then she went over to the left ventricle where she showed why it was so hard for the techs to get a good measurement because of where he was laying and where she planned to measure. Bless her amazing, wonderful, intelligent soul. She measured him at a 12.2.
12.2
Do you know where that is? That's almost MILD.
MILD.
So, before, Myers was in the moderate category. 1 number away from severe. Now, he's just shy of that mild category. It's like a whole new world over here.
With a mild diagnosis:
- 90% of children develop normally. They achieve milestones on time. They score similar to peers on academic testing.
- He will still have an increased chance of having Down Syndrome. The percentage goes up to about 10%. About half of that percentage of kids actually have it. The only way to tell is to do an amniocentesis. We aren't doing it.
- He might get a low enough measurement while still in utero. It may go down shortly after he's born.
To put it into perspective, I have no sadness or fear of this outcome. With a moderate diagnosis, I was talking about my child having brain surgery right away. They talked about him being still born. It's completely different.
Our second doctor, or the one that day, doesn't want to see us again for 4 weeks. Peace out! I am completely happy not walking back into that office for 4 more weeks. We've got this. Am I still nervous? Absolutely. The fluid filled space could still grow. We could quickly end up back in the moderate or severe category. But most kids, you would never even know. And, I'm so good with that answer.
Myers will be exactly who he and his Heavenly Father have already decided he is supposed to be. And, I'm so good with whatever answer that is. We absolutely love him. We are grateful for such amazing doctors and techs that have measured and watched him. We are so thankful that they will continue to watch him. Mostly, we're happy that he's ours and can't wait to meet him.
We really can't thank all of our family and friends for the millions of prayers.
2 Weeks - Ventriculomegaly Post 2
Casey and I decided we would go ahead and do blood work to check for infection. We would hold off on an amniocentesis because we didn't feel like right now it provided any long term benefit for Myers for us to know sooner then birth the cause of his ventriculomegaly. We would decide on the MRI at our next appointment.
I went and got my blood drawn on the following Monday. The results would take 2-3 days but I would get them at our next appointment. That Friday, I called the dr's office and asked for the results. The counselor called me back just before 4 pm. The blood work tested for some kind of flu/virus that had a 3 letter name, toxioplasmosis (?) and one other thing. All of the blood work came back normal. I was so grateful because the infection cause seemed to have a lot of the less desired side effects. It helped us get through the weekend knowing.
I felt a little bit meh for the two weeks. It's hard to know what to wish for and pray for. I wished for a positive outcome. I researched. A part of me felt really selfish wishing that my child would be okay when so many other people continue to deal with this diagnosis each day.
I tried to be fair with myself with every article I read. I stayed away from baby chat rooms and looked for educational studies. Everything I could find had really good outcomes for kids with a number less than 12. I couldn't find a study with a child that matched Myers. It was frustrating. I needed to know what I was looking at, but I didn't find it. I looked at neurosurgeons, trying to decide from a picture and a brief history of education which one I wished would do the surgery. Which one would be best? I can tell you every provider our insurance covers for miles. Finally, I watched a shunt surgery. I don't know if I would recommend most parents watch it, but for me it was really helpful. I needed to see exactly what the surgery entailed. I didn't watch a home movie. I think I watched something from Harvard or somewhere equally noteworthy. It seemed to be prepared for medical students and the surgeon did a really good job explaining as he went through each step. Old Kalli could have watched it without flinching and would know it was a good thing. Mom Kalli got queasy twice. But, it was helpful. I am glad I was able to see it. It made me feel better about the whole thing.
I hurt for Myers. I hurt when I read side effects like feeling dizzy or headaches. I felt real pain when thinking that I couldn't make any of the symptoms go away. I felt sad not knowing what the right decision was with each test/ cause/ outcome. There were some decisions I was scared that I might have to make that I wasn't ready to make.
Case and I told our families and a couple of close friends. It's kind of hard to tell people when I don't exactly know what I'm trying to tell them. This could be really scary, but we don't really know yet. We may learn a little more, but not everything. I'm continually learning patience in this earthly life. I wish I would have read that manual in Heaven before making my way here.
Some days, I am completely okay. We've got this. No fear. And, other days, I'm mostly okay. But there will be a time during that day when I have to take a minute and completely lose it. I'm nervous. I don't like the unknown. I can't prepare for unknown. I guess in ways that's what all parenting is, Unknown. But, I'm better with knowing. I have rational thoughts and thoughts that are completely normal. One minute, I'm planning and deciding which next big purchase to make. The next, I'm thinking it would be best to pack up all his big clothes until he needs to wear them. And, 5 minutes later, I'm buying him a stuffed lion. He needs a lion. Every brave little boy only needs a lion and everything will be fine.
Case is a rock. And, he read that book on patience. There wasn't anything else we could do but be patient, but I just can't be putting up with that.
My sleep got worse as the appointment got closer. I thought I actually was handling things better than I was, but I completely stopped sleeping through most of the night. I would just lay in various rooms in the house and try to go to sleep. It got worse the closer we got to our next appointment.
Our families have been really awesome. My mom calls me no less than 3 times a day. She went grocery shopping for us. She stops at our house, makes a dinner and all I have to do is put it in the oven. She comes over every night that Casey has class to "decorate". She's not decorating. She's cleaning, and sitting at my kitchen table for hours so that I'm not alone. And, she'll talk. She'll talk when I'm scared. She'll talk when I'm fine. She always is, but really, she has been such a blessing. Casey's mom has brought us a cute treat once each week. We had a pizza in our fridge one weekend so we didn't drive out for Sunday dinner. We could stay home and sleep. (and we did) Countless numbers of people have told us that we are in their prayers and we have felt it. And, what we really needed we got. Two weeks went by really quickly. And, that was the biggest blessing. We were busy. We had tasks. We didn't have time to slow down and dwell. And, I'm so grateful for that.
We've appreciated other people's patience. Even if they didn't know why. We've been scattered. We've dropped the ball on commitments. We are only half focused in conversation or text. We'll be back to the real world now, and we're sorry we left you for a minute.
Numb -Ventriculomegaly Post 1
2. The tube draining from the ventricle wasn't anatomically big enough and would possibly require surgery.
3. It might just need to be monitored as he's growing. I can't exactly remember this one because it was obviously too positive and we didn't talk about it much. This is usually mild cases, 10-12, not 14.
4. Genetic --but hydrocephaly is X linked so think that through. (Hint- are you sure it's X linked? Hypothesis much? )
2. Amniocentesis which may tell us the cause, but they still wouldn't do anything until after he's born
3. Blood work which may eliminate 1-2 causes but still wouldn't give a definite answer.
4. Fetal MRI
Thursday, October 8, 2015
8 weeks (Rewind- - 6/9/15)
- granola bars
- chicken
- pasta
- mac n' cheese t.v. dinner
- Applebee's
-Olive Garden
- mayo
- chicken salad sandwiches
- coke
MOM
Monday, October 5, 2015
Little Red is FREE
2. I made sure I could pay extra on my loan. Read the fine print, did you know on some loans that comes with fees?! Make sure you check!
3. Round up. Most car payments are a random amount "$208.75". I picked a number, still within my budget, and told myself it was my car payment. $220 was the number I picked and I NEVER paid below that because that number was my car payment in my mind. Usually, I paid well over that $220, but that was my number that I never went below. Every penny counts.
4. Our budget is loose. So, we budget more money for things like lunches out. If ever I bought pizza on my debit card and a friend paid me for half, the money they paid me back went towards a car payment instead of back into the checking account.
5. Sometimes I use my debit card for work. (It's often, I am horribly impatient when it comes to waiting for someone else to finish with the company card). When I get reimbursed, that money doesn't go back into checking. We already account for it being "gone" so I make a car payment.
Disclaimer: Case loathes that I do this step and it 100% ruins budgets, but whatev, it's what I'm into.
6. This one is random, and not really a step or tip, but one month the bank teller applied the truck, car payment, and the "extra" that I was paying all on the car. It sucked when I had to make another truck payment but it's awesome now.
Now, to start shopping for my SUV.
Thursday, October 1, 2015
100
Papa is looking forward to your first ride on a horse. I think that's going to happen a lot sooner than Mom wants. I'll make sure you are bundled up, but it's not Papa's fault you decided to come in the middle of winter.
Gammie has bought you enough stuff for you and 3 brothers. She's even helped paint your room! She's mostly looking foward to setting up your crib.
Aunt Madison, it's safe to say she likes you. She checks in a lot. Mostly, I think she can't wait to babysit. I hope I at least get to hold you for an hour first.
Grandma Holmes can't believe you are a boy. Another boy! I can't either. Please don't break any bones before age 5. Please be careful!
Grams and Gramps Holmes think you look like your dad. I hope you get his curly hair and blue eyes. I think it's a long shot, but maybe grow a little bit of hair before you come? They've come over lots to help mow the lawn, tape floors, paint, whatever. You are a pretty lucky boy.
Aunt Erica and Ash have picked out and bought enough clothes for your first year. I think Erica is a preferred customer at Nordy's.
Gran is working hard on all your bedding, and I think she'd like you to send a sister next, but I think she's pretty happy about a little cowboy.
Your dad, is in a calm state of panic. I've given him a few things to pick out- stroller and monitor. I better not give him anymore. He's making sure it's only the best, it's a good deal, and it's functional. He's pulling lots of late nights, early mornings, and weekends, in your nursery. His favorite part might be your closet shelves. And, he's really glad your room isn't purple anymore.
Wednesday, May 13, 2015
Creep Clothes, baby style
Okay, maybe I'm just not in tune with vomit inducing levels of cute. We need to address a concern.
I'm in Carter's (and TJ and Gap) searching for a baby gift. It was for my boss. So, super cute obvi. People need to know I'm not a style prude, but also normal.
My options:
- super darling outfit with bicycles. And, a onesie "auntie's favorite". Yep, not your kids aunt. That just made it weird.
- a juicy couture one piece with "juicy" across the bib.... didn't juicy couture go out of style with words on the ass sweatpants? Not buying that. Just no.
- the cutest flamingo print dress. And, a onesie "daddy's sunshine" uum, no. Why? Seriously, why? Why does it have to say anything. You either pushed the kid out, or watched it get pushed. We get it. You like your kid. But, weird. Where is the "you are the boss. Here's a cute gift. Let's have some personal boundaries gift" And THAT is saying something because I love learning, knowing and caring about people and their life happiness but it's just too far.
In conclusion, I would like to thank The Gap for the freaking adorable denim dress, stripe sweater and matching tights. On sale, cute, not weird, and no reference to family ties. Gap is clutch. Now, can I have a discount for the brand thumbs up?