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! 

Underlying Expectations

I learned during my pregnancy through a lot of research that you cannot afford to have expectations with spina bifida. It is a disorder that can have virtually no effect at all on the individual, it could be fatal for the individual, or it could be one of the millions of possibilities in between. Paralysis, incontinence, mental delays, behavioral issues... from physical disability to mental disability... an unending list of ways spina bifida can turn out. This is why I made myself get into the mindset of having no expectations when I was pregnant. Joe and I agreed that survival for our daughter was our only hope, and that anything on top of that would just be icing on the cake! No expectations... don't focus on the worst scenario because it is setting you up for sadness, don't focus on the best scenario because it is setting you up for failure... no expectations. This is what we thought we had.

Then our little Mira Cole got here, and she sailed through the most difficult things I've ever personally witnessed. These horrendous experiences no one should have to go through, and here's this tiny little beautiful baby, taking it all in stride, acting like it's no big deal. I got used to hearing time after time "she's great" "nothing's wrong" "everything went better than expected" etc. etc. I didn't realize that I got so used to hearing the best case scenario, that I subconsciously started expecting everything to always be the best case. After all, she's beaten so many odds thus far. This underlying expectation that I was unaware of is what made today really, really hard.

Today we had her hip ultrasound, to make sure her hips are growing in properly, and her CMG. A CMG is where they measure the pressure in her bladder and monitor the activity of the bladder, bowels, and sphincter. I thought today would be pretty routine. The only thing I was dreading was finding out whether or not we were going to start her casting and surgeries on her club foot. Don't get me wrong, I'm happy her foot can be helped, but I wasn't looking forward to starting more surgeries on her when she's just barely healing from her other surgeries. 

So orthopedics came in, and I was super relieved when he said we're going to wait probably another six months until we work on her foot. This will give her skin some time to firm up and not be so susceptible to skin damage from the casting. Phew... I sighed an internal gasp of relief. But then he pulled up the computer and looked at her hip ultrasound from that morning. He told us that by now, the hips are supposed to be settled properly into their sockets, but Mira's right hip has failed to do so. If it doesn't settle into the socket properly in the next four weeks, she's going to have to wear a brace that will go up over her shoulders, mount to her legs, and pull her legs up towards her chest. This position will force the hips to settle into the sockets in the proper alignment. This was kind of difficult to take in because it has kind of been the first bad news we've received when monitoring her progress. Okay, four weeks, I thought "you can do this baby girl, no big deal, a socket isn't going to take you down,". I chewed that over while I waited for the last doctor of they day to come in. Urology.

We've been anxiously awaiting our next meeting with the urologist to find out if not cathing is still okay. Well, we got some very unexpected news. It turns out the CMG revealed some troublesome results. Mira has been wetting her diapers, which is a great sign... usually. But in her case, it was actually a symptom of something else. In a baby her age, the bladder is supposed to be relaxed almost all the time. For Mira, this is not the case. Her bladder is constantly convulsing, which is why we were hardly getting anything when we were cathing, because her bladder wouldn't allow anything to stay in it for long since it was always agitating itself and pushing everything out. Another problem is that when the bladder convulses to push urine out, the sphincter is supposed to open to allow Mira to urinate without complications. Unfortunately, Mira's does the exact opposite of what it's supposed to do. When Mira's bladder contracts and pushes out urine, her sphincter also contracts, and doesn't allow the urine to come out when it should. This causes her sphincter and bladder to kind of fight with each other instead of work together the way they should. This is also when the concern of kidney damage comes in. If the sphincter doesn't allow the urine to come out, it will reflux backwards though the system, into the kidneys, and start damaging the tissue. This is the number one thing you want to avoid because the kidneys do not heal themselves. Once they're damaged, you're on the track to dialysis or a transplant.

All of this was a lot to take in, and I was fighting back tears the whole time the urologist was explaining what her system is dangerously doing to herself. Then the treatment options were discussed. We are now cathing again... that alone made a tear or two escape from my eyes as soon as he said it... but now we're also giving her medication three times a day presumably indefinitely. This medicine will force her bladder to relax, and her dose will be upped every six months to a year. If the medicine does not cause her bladder and sphincter to act accordingly by the time she is five or six years old, surgeries will be required. He said sometimes the medicine can fix it, but that only applies to a very small window of children, so to monitor her progress, but don't expect this to fix it. There's that word again "expect". We should expect to be cathing her and medicating her indefinitely, and expect that more surgeries could be around the corner by the time she's school age. Geeze, and I was dreading surgery on her foot... I was not expecting to discuss surgery on her organs today, let alone staring into the cold, hard eyes of this being a likely reality. Expecting, expecting, expecting. The things I was expecting, the things I was NOT expecting... And in all that time, I forgot that I wasn't supposed to have any expectations. Had I stuck to that rule, today wouldn't have hurt so bad. It wouldn't have knocked the wind out of me, or hit me in the gut hard enough to do so in the first place, but I unknowingly had underlying expectations. 

I'll have to remember this lesson, and remember it hard, because I don't want blindsided by my own feelings lurking in the shadows like this again. What I want to focus on is the fact that her overall health is great. She is gaining weight, and today hit her own personal record. She is officially nine pounds, her heaviest yet, eating great, sleeping great, and... (Drum roll, please), she started smiling at people the other day!!! Actual smiling, not having gas stuck and smiling in her sleep, nope, she is looking right at me and giving me a beautiful, genuine, ear to ear grin that is pure amusement! 

So tomorrow I will start administering her meds three times a day, and once again, cathing my beautiful, grinning baby. I'll also start doing some hip therapies to try and encourage her hip into the socket properly. I'm sorry that her break was short lived, and I'm sad that she couldn't beat the odds on this one, but she's accomplished so much, and even though I cried and it was hard to take in, this is not the end of the world, and we will be okay. She will be okay. It will be okay. And I will try to get a handle on my underlying expectations, and that, too, will be okay.