Crying & Driving

How my night ended:

I'm driving to Walmart, late at night, crying. Who knew buying prune juice would be so monumentally important that it couldn't wait until morning. But, when you get told by a neurosurgeon that you need to give your baby prune juice to possibly prevent her shunt from malfunctioning, you do it, and you do it now.

I thought my day was going to go great. There was a lot going on, but I made that mistake again where I accidentally had expectations. They say if you want to make God laugh, just tell him your plans... I have got to stop thinking things are in black and white while forgetting all of those gray areas lurking in the shadows. 

Today, Dustin started his very first day of school, and Mira had her Pittsburgh spina bifida clinic appointment. Joe and I both could not be at both places at one time, so Joe took Mira to her appointment so I could take Dustin to and from school. We thought that today we would finally learn as to whether or not her right hip dysplasia has cleared up from using her hip brace these past couple of months, and we thought we would find out when operation(s) on her left club foot will begin. We did not find out either of these things because her orthopedic doctor had an emergency, and could not attend clinic today. What we found out instead is that the ventricles in Mira's brain have become larger, Mira's head circumference had increased drastically compared to the growth curve she was previously on, and pressure within her body is causing her back incision to "bump" out, which could compromise her myelomeningocele repair. All of these things are clearly not good, and clearly not what we expected to hear today, at all.

Even more disheartening, is that they have no idea what is causing it, so they don't know how to fix it yet. Mira has recently been somewhat constipated, and they think it is possible that the extra pressure in her belly is causing her cerebral spinal fluid to become pressurized everywhere else. This could be what is causing all of the above symptoms I listed, so this is where rushing to get prune juice comes in. For this week, we have to implement prune juice into her diet to keep her bowels moving. Hopefully, if we can get her completely regular, all of the pressure will be relieved and her symptoms will go away.

There is also a possibility that her shunt is on the wrong setting, which would be a very easy fix. They just adjust the setting with a magnet, and her symptoms disappear.

There is also a possibility that an unknown factor is causing her shunt to fail. All of the above reasons are why we are meeting with dr. Greene, the head neurosurgeon, on Thursday. If the prune juice/regularity does not clear up her symptoms, we'll be discussing further options then.

So when Joe got home from his and Mira's twelve hour day in Pittsburgh, we put the kids in bed together, gave Mira an exam to gauge her condition, and I floored it to Walmart to get the prune juice, while having a healthy and relieving sob fest.

It's frustrating, as a parent, to see your child go through things you cannot prevent. Like developing a bad habit, going down a harmful path, or hanging out with negative influences. It's frustrating, because you want to shield them from such things. However, lacking the ability to protect your child from their own body is frustrating and disheartening on a level I could never accurately explain. 

She's my daughter. To me, she is perfectly normal. I look at her, and I see a happy, burping, smiling, farting, cooing, drooling, beautiful baby... I see my daughter. It's so easy to forget sometimes, that within my perfectly normal baby, nothing is perfectly normal. It's easy to forget that within that tiny, gorgeous body, a war is being waged, and my daughter's organs, functions, systems, nerves, and parts are the collateral damage. So while no part of me is hopeless, or regretful, or angry, I still ended my night crying and driving because I am scared. I am scared of what's to come, and what is happening within that tiny body. I'm scared to continue hearing things I never thought of or wanted to hear. But my fears will keep me motivated to do what's best for her, and my fears will humble me to remember that she is in God's hands. Even if I have to end my 'great day' crying and driving.

NIP

NIP: Nursing In Public. I've done it before; I have three children, all of them have been breastfed, so nursing in public is something I have done many times. However, yesterday is the first time I nursed in public without a cover, and I have to say, I wish I had done it a long time ago!
Joe, I, and the kids went to see fireworks with Tammy and her family. It was at a local festival, so we walked around, let Dustin play some games, got Aryanna a pretty flower halo to wear on her head, and got some funnel cakes. Then we went back to our cars, popped out some fold-up chairs, and relaxed while we waited for the fireworks show. Mira started to get hungry, so I nursed her. As I said, I have nursed in public many times, but never without a cover. I am usually in the grocery store where it is air-conditioned, or at someone's house where I can go into another room. However, this time we were outside, where the heat was already pretty strong, and my vehicle does not have air conditioning. So, I was not going to cover Mira in a blanket and make her sweat and over-heat just so she could get her meal. So for the first time, I just (discreetly) pulled out my breast and let her eat. I honestly wish I would have done this for all of my children.
First off, no matter where you are, when using a cover, you always make the baby and yourself sweat. Always. The skin-to-skin plus being smothered by a blanket causes you both to sweat, and it is pretty uncomfortable, I could imagine it is for the baby, too!
Secondly, when you use a cover, EVERYONE knows you are nursing, and you tend to get a lot of glares! The blanket is like a huge neon sign that says "LOOK AT ME, I'M BREASTFEEDING OVER HERE!" When I nursed Mira yesterday with no cover, almost everyone walking past had NO IDEA I was even nursing. I was showing no more cleavage than I would have in a normal shirt, and her head covered everything private about my breast. A few people looked at me, saw that I was nursing, and continued on their way. I did not get ONE dirty look; not even one! My faith in others was restored a little bit throughout the process, and I have decided that I am DONE with covers. If people cannot handle a breastfeeding baby, then they can choose not to look. I cannot choose to NOT feed my baby, so from now on, I am choosing to do so in whatever way makes her most comfortable, and NOT being smothered by a blanket while she is trying to eat is probably more comfortable for her!
On a different note, Mira did GREAT with the fireworks. Tammy held her and kept her ears plugged the whole time, and there were quite a few moments where she was actually watching them, too! She looked like she was in awe of the spectacle of lights, and it was awesome to see her enthralled by them! She never cried or became agitated, so I am hoping this is a good sign that she won't have hearing sensitivities. Dustin and Aryanna had a blast, as well, and it was all around just a great family outing!
So no more breastfeeding covers for us! Besides, the more people see it, the more tolerant society will need to become. If you want things to change, start with yourself! So I am starting! I am going to make feeding babies acceptable in all forms! If you want to bottle feed, GREAT! If you want to nurse with a cover, GREAT! If you want your breasts out and your baby not covered in cloth to eat, GREAT! Babies getting nutrition is all that matters, and as long as you are taking care of your children, there should be no judgment! You'll never get it from me, and I hope not to get it from others! But if I do get a dirty look, or a pitiful comment, maybe I'll throw a blanket on their head and say "Now, go get your lunch and see how you like it. Have a nice day!"

Mira, The Con Artist?

Today Mira had her weekly in-home therapy session through early intervention. We usually do her therapies at1:30 on Thursdays because it seems to be a good day for scheduling, and normally at 1:30 she's happy and alert, so ready to participate.

Today, my early intervention coordinator also attended the appointment along with Mira's therapist so we could fill out a questionnaire to monitor her progress. After the questionnaire, it was time to do Mira's therapy. Two stretches in, she started doing the "pain cry" so her therapist thought we should give her a break. This cry usually means gas bubbles, so I was working on getting gas out of her and changing her position for about ten minutes when her therapist thought it might be a good idea to just skip therapy for the day. He said he'll give her a get out of therapy free card because he doesn't want to make her work when she's not feeling well. So I continued to hold and soothe her while we set up next weeks appointment, and then our visitors left.

Roughly 20 seconds after they closed the door upon their exit, Mira stopped crying and was all smiles. I think she conned us. I think she metaphorically put her foot down! I think that this week, she drew the line at the harness and refused to partake in her hour therapy session where she has to work. And once again, I can't say I blame her! My beautiful little miracle, and con artist, has had enough for this week. I guess we'll see how she feels next week!

Hip Dysplasia

Mira's right hip is not forming into the socket the way it should, which is called hip dysplasia. We went down to Pittsburgh today to find out if it had developed normally on its own, or if we would have to have treatment for it, and we also had her audiology appointment today to make sure she is hearing properly.

Her audiology appointment went great! They said everything looks completely normal! Then we had her hip ultrasound, and then went to spina bifida clinic to get the results of her hip ultrasound. In spina bifida clinic, they informed us that her hip dysplasia has not improved, so now she has to be in a harness. The harness wraps around her midsection and shoulders and straps down to pieces attached to her legs. It holds her legs up in the air so that her thighs are jutted out at a 90 degree angle. Apparently, this position is optimal for encouraging the hip to develop into the socket properly. We have to wear the harness on her for at least half of every day and all through the night when we sleeps. We go back down in 4 to 5 weeks to monitor her progress.

While it is disheartening that she has to deal with another obstacle, it wasn't as big of a kick in the gut as her bladder problems were last time. The issues with her bladder and sphincter caught us completely off guard last time. This time, however, we knew what we were going down for, and we knew what the possible outcomes were, so we were prepared for this news.

It's just going to take a few days, at least, to get used to. She hates it! She screams right now when it's on her because she cannot move her legs into her favorite position. She likes her left leg tucked up under her butt, and she likes her right leg completely extended out... She can't do either of these with the harness on, so she screams because she doesn't like feeling restrained. I honestly can't say I blame her! I'll post pictures of her in her harness soon. Maybe after she gets more used to it so I don't feel like I'm capturing pics of her in a torcher device. 

How Am I Going To Do This?

I started my college classes back up today, and I nearly had a panic attack. I'm very excited about the idea of continuing my education and bettering my family's prosperity in the process. However, it feels a lot different now, getting back to learning about my future career specialty, when simply learning about Mira and everything she needs feels like learning a specialty all on its own. 

I'm a psychology major, and the field absolutely fascinates me, it always has. But, with everything there is to learn about Mira and spina bifida in general, I kind of feel like I'm already learning everything I need to be learning right now, and adding college back on top of that is a little overwhelming. I already have all of these overwhelming thoughts in my head all the time; is Mira going to need more surgery soon? On her bladder? Sphincter? Shunt? Foot? Hip? All of the above? What can I do to help her more? What can I learn to help her more? Knowledge is power, and researching her conditions has helped quite a bit so far, so just having Mira and doing the best I can already makes me a full time student. The only difference is that with college, the classes have a start and stop time. You finish the assignment, and you move on; researching for Mira is not like that. It doesn't stop and it never will. Dustin is getting ready to start school, Aryanna is walking and starting to talk, Mira has to be catheterized, medicated, therapy done, doctors seen, appointments kept. I am a stay at home, and I take my wifely duties seriously. The house needs cleaned, dinner needs cooked, my family needs taken care of, and that entails very small things, but those things never end. Very small things, like changing a diaper, cooking a meal, switching the loads of laundry over, and cleaning the floors. These things are not large tasks, but when you pile them all on top of each other, the job never ends. There's no such thing as clocking out or having everything done; household work is never done. There's always something else that needs done. The ABC's need sung, a spider needs killed, a mess needs cleaned up, and a child needs fed or cleaned or hugged. 

Since having Mira, my tasks have all been laid out for me. I am constantly going through a mental check list to make sure I am taking care of everything that needs my attention: the needs of my children, the needs of my fiancé, the needs of my house; and now to add the needs of my classes into that rotation is slightly terrifying in the enormity of it. BUT in my experience, it is usually the case that, things worth doing are difficult. It wouldn't be as meaningful if it was easy. It wouldn't be life changing if no struggle was required. It wouldn't be rewarding if you didn't have to fight for it.

It's always nice to have those days where you can lay around and bask in the absolute laziness of yourself. Where you lay around and do nothing because, hey, why not? Starting school back up is just another reminder that those days are behind me. I can't NOT cath Mira on time, or give her the medicine her bladder requires, or skip my classes because I don't feel like it right now. I can't do stuff like that anymore. And while it would be nice to bask in absolute laziness, it wouldn't be nearly as rewarding as taking care of my children and continuing my education. So while I continually ask myself 'how the hell am I possibly going to do this?', I also know that the question is rhetorical, because I know I just will. I will do this. I am doing this. And I'll be better for it, my children will be better, my life will be better for it, and that's all that matters.

Benefit Dinner

The benefit dinner was on Saturday, June 15th. It was amazing! Words will never be able to describe how moving it is to see a community come together for someone else, my someone else, my daughter. 

My Dad and brother ran the kitchen. My Dad was a chef and restaurant manager for roughly 30 years, and my brother has fallen in his very big foot steps, so needless to say, the spaghetti was cooked perfectly al dente! So many family members helped in so many ways! My sister is a perfect planner and should really consider throwing events for a living because every detail is thought through and planned to the T when she's in charge! It was so beautiful!

Many people came, we had a really great turn out, and it was so nice to see all of our family members together and celebrating for Mira with the community. We had a great time, and we made enough money to where Joe and I agreed that we would share some of the proceeds with a couple other local families that also have babies with spina bifida. 

We wore t-shirts to honor Mira, purple (the awareness color for the Arnold chiari malformation) shirts  with yellow (the awareness color for spina bifida and hydrocephalus) print. I also made tons of little yellow ribbon pins for everyone that attended, and I made a few extra into hair bows for Aryanna and I. 

We had a 50/50 raffle every hour and a Chinese auction that had over 60 items (including steelers tickets, corn hole boards, hundreds of, if not over a thousand, dollars worth in gift cards, and so much more!) The gentleman who won the first 50/50 drawing insisted that I take his winning ticket, and while I don't know your name sir, I thank you, because you were so kind, and I don't think I'll ever forget my interaction with you. It was amazing seeing complete strangers, old friends, acquaintances, and family members alike gathered and having a blast to come support my daughter.

At the end of the night, Joe and I went in front of everyone, took the microphone, and personally thanked all that attended, donated, and worked so hard. I got about three words into my 'speech' when I started crying. It was really amazing, to stand before a crowd of people, some who don't know me, my daughter, or spina bifida from a hole in the ground, yet to feel how loved and supported we were! To just spend a day constantly seeing and feeling how much Mira matters to so many people, to see how many people are pulling for her, thinking of her, praying for her, and loving her! It was beautiful! It was absolutely beautiful!

Making A Come Back

Yesterday I didn't do much. I laid around, didn't clean, didn't really cook either other than the bare minimum to feed the kids. What I'm saying is that I wallowed around in self-pity. Yes, I know other people have it way worse, I know I need to be grateful that my daughter is alive and thriving, and I know that I need to be strong for her; but even with all of that, yesterday was still a good day to wallow around in self-pity.

It hurt my heart to set her cathing station back up. I got so used to just having a changing table... Diapers, wet wipes, and diaper cream. The only items I've ever needed on a changing table before having Mira, and it hurt to put the catheters back, the containers to separate clean and dirty caths, the lubricant, the paper towels to use as a lubricant surface, the bright light that attaches at the end so I can see what I'm doing to her, the urine collecting cups, the germ-x everywhere to be as clean as possible, and also her medicine and syringes. It hurt to give her medicine for the first time... The medicine is the reason why we have to cath again, but the medicine is what also will keep her bladder and sphincter from attacking each other... I love and hate that medicine. I love that it helps her bladder to relax so her organ isn't freaking out 24/7, I love that it has the potential to teach her body to regulate itself; but I hate that it's a medicine that means she'll possibly always have to be cathed, I hate that it's a medicine that we're supposed to assume she'll be taking for life... because it makes me wonder if there will be more, more medications that she'll have to be on indefinitely. I hate having to add more things to the list that she'll just have to get used to. I hate that these types of complications often lead to surgeries, and surgical plans spread out over the course of several years. So yes, I spent yesterday wallowing.

However; after my day of wallowing, I feel refreshed. I feel purpose. I once again have conviction in my actions. I'm now very excited to meet with Mike tomorrow, our in-home physical therapist, to see if he has recommendations for ways to help with her hip dysplasia. I've printed out another log to keep track of Mira's output amount when we cath. I'm fine tuning a new schedule to stay on top of her medicine three times a day and cathing four times a day, along with eating roughly every three hours, and making sure we're implementing her stretches and massages at regular periods throughout the day. 

So I spent yesterday feeling sorry for my baby girl, sorry for the things that she'll have to get used to, and I'd be lying if I said I wasn't feeling sorry for myself. But that's just it, she'll get used to it, this will all become normal for us both. And in the mean time, today is a new day, there are things I can be doing to make this easier on the both of us, and I'm damn well going to try!