Shunt Taps and Emotional Breakdowns

We were admitted into the ER very quickly, and they immediately started running tests. One was a CT, which I demanded they use the low-radiation CT scanner on the second floor, not the normal-level-radiation CT scanner on the ER floor. If Mira is going to be getting regular head scans for the rest of her life, it's important to make sure she's not being subjected to anymore radiation than absolutely necessary.

They did two ultrasounds, one of her shunt tract and one of the bottom of her abdomen, looking for any obstructions throughout the length of her shunt tract, and at the end where the shunt empties the cerebral spinal fluid into the bottom of the abdominal cavity.

They did blood work, urine cultures, and started an IV site. They took her temperature, and for the first time she had a real fever, 103.6. One of the highest fevers she's ever had. She was miserable. Lethargic, red, irritable, and uncomfortable.

Joe had just went to get me a cup of coffee, when they came in to get her blood samples. I asked them to take the blood from one of her feet, and create the IV site there, as well. I know this is more difficult, but with Mira, she has prominent, yet small veins, so it's difficult no matter where they try for it, and at least in one of her feet, she won't feel it. So I always request for them to do such testing in her feet so she won't be in more pain. They just have to be careful if they do it on her club foot, because she can't have a bandaid or medical tape in a position that causes the creases of her club foot to crease more. So when they do anything with her club foot, they need to pay attention to their placement, so they don't undo all the progress we've made with her physical therapy. 

I thought these little things in her best interest were all I had to worry about while they were drawing blood, and I was waiting for Joe to return with my coffee. However, halfway through the nurses getting the blood samples, a neurosurgeon came in and said they need to do a shunt tap because the results of her CT revealed her ventricles are enlarged. This is more affirmation of a shunt malfunction, but hey need to measure the pressure in her ventricles and shunt. In order to do that, they "tap the shunt". This means they use a needle that goes through her head, into the shunt. Once the needle is in place, they attach a device to it that is fitted with a tube. That tube is marked like a thermometer, or a measuring cup. Once the tube is in place, the cerebral spinal fluid will leach its way into the tube, displaying the level of pressure within her head of cerebral spinal fluid.

Once the neurosurgeon explained the procedure, the purpose of it, and how this test would be the final factor to dictate whether or not she'd be getting surgery, I concented. I've never even heard of this test before, so I didn't know to expect it, but they explained that if the pressure revealed a level of 22 or higher, that would definitely indicate shunt malfunction. They also explained that she will be in pain right after they put the needle into the shunt, but directly after that, we need to calm her down to obtain an accurate reading. If she's tense, distressed, or crying when they're trying to get a measurement, her distress will increase the pressure, and the results will be deceivingly high; so we need to get a measurement level when she is calm and at rest. 

So, we started. The neurosurgeon prepped her shunt site, a nurse held her head still, and a resident handed the neurosurgeon equipment as needed. I held down my baby's arms while she screamed, as they stuck a needle in her head. I'm going to repeat that because I can still barely wrap my mind around it. I held my baby's arms down while she screamed, as they stuck a needle in her head. It was horrible. But in that moment, I only cared about what she needed, so I held her hands with one of my hands, and immediately started trying to pacify her with her binky, her favorite cloth book, her favorite ball, and my soothing voice. I got her calm, I got her distracted, and they got an accurate reading. It was 16. Much lower than the dreaded 22 or higher. He said this is not what he expected, but it was very reassuring. He said the ultimate decision as to whether or not she's getting surgery is not up to him, it was up to the chair of neurosurgery, so she could still get the surgery, but it was much less likely now that she is actually having a shunt malfunction.

I felt more relieved, and Joe arrived with my coffee. Mira was smiling, and all the doctors cleared out of the room. I thought everything was fine, because I was only focused on what she needed at the time. But as the danger and pain to her faded, it started sinking it what I had just done/witnessed happen to my daughter. As I stood by her bed, coffee in hand, the room started looking like it was swaying back and forth. I told Joe "I think I'm gonna throw up. I need to go outside." So off I went.

As I was walking out, I could tell I was going to explode with tears any minute. I don't know why it hit me so hard, especially after it was already over, but it did. I could tell that as soon as I spoke a sentence, I was going to lose it. The tears were already touching my eye lashes, and welling on my lids, but I needed to get it out. 

I walked to the far end of one of the parking lots, trying to get away from people, so I could call someone. A random woman came up and started trying to small talk with me. I felt horrible, because in normal circumstances, I would never brush someone off or be rude, but all I could say was "yeah" and then I walked away a few steps as my best friend and soulmate, Allison, called me back. As soon as I got the phone to my ear, I started sobbing, and said "I held her arms down while she was screaming. I held her little arms down while she screamed. While they stuck a needle in her head." The uncontrollable crying just kept taking over, again and again, and I could not stop sobbing. I curled up on a set of steps, and bawled into the phone as Allison tried to console me. 

That type of cry reminded me of the first time I met Mira. The first time I got to touch her, and hold her tiny hand, and how after only 60 seconds of seeing her, they took her away. They had to take her for her surgery, and I had just met her, and couldn't go with her. When I had to let go of her little hand then, the sobs just bursted out of me. 

That's how this was. I couldn't control it, I couldn't dial it back, I couldn't stop it. All I could do was break down, and cry. In between outbursts, I kept saying that I didn't know why this was effecting me so much, why, after everything we've been through, this procedure shook me so badly. But it did. Eventually Allison talked me down. She got me talking about other things that had happened, got the focus back on what's going on with, and what's best for, Mira. We said our "love you's", got off the phone, I dried my tears, and went back in to be with my girl.

Terrifying -- Absolutely Terrifying

With shunt malfunctions, one can go from thriving, and showing no symptoms, to deteriorating quickly and in an coma within a matter of hours. Shunt malfunctions can be fatal, so when your child has a shunt, and you suspect a shunt malfunction, it feels like you're fighting the clock for your life, or your child's life, more accurately.

During the drive down, at first I was driving and Joe was in the back with Mira trying to keep her awake. By a half an hour into the drive, Joe was having a difficult time preventing her from falling asleep, so we pulled off in Grove City. I got her out of the car, into the cold air, and got her to wake up for a while. When I thought I could keep her awake, we got back in, and Joe and I switched. He started driving and I stayed in the back with Mira to keep her awake. For about 15 minutes, everything was okay, but by Slippery Rock, she wouldn't stay awake.

I would shake her shoulder every 15 seconds or so, and say "Mira, wake up!"  But it hit a point, where she would only wake up for a split second to whimper in pain, and wouldn't even open her eyes. Then she stopped responding to me entirely.

In this moment, I thought my daughter was slipping into a coma before my very eyes, beneath my own hand, and there was nothing I could do about it. I was terrified. Truly terrified in every cell of my body. I kept my hand on her chest to make sure she was still breathing. Tears were streaming down my face as I called Pittsburgh. I was getting ready to have an ambulance and helicopter meet us on the Interstate. 

Right as a neurosurgeon got on the phone, Mira woke up and looked up at me. I squeezed my eyes shut, and exhaled in the most relieving sigh I've ever felt in my life. Thank God, was the audible sound of my sigh, and I kept eye contact with her after I could open my eyes again.I described to the doctor what was occurring, and that we were roughly an hour away. He said as long as she is responding, it's okay, and that an ambulance and hellicopter probably wouldn't be able to get to us any quicker than we could get to the hospital at this point, so to just keep her responding to me, and get there immediately.

For the rest of the ride, I thought we were racing against the clock before she slipped into a coma. I was terrified. I kept checking the responsiveness of her pupils with my penlight, shaking her shoulder, making her look at me, checking her breath sounds, and trying not to allow myself to be overcome by the shear terror I was actually feeling.

We finally got to the hospital, and she was still responsive. Thank God.

Starting Symptoms and Heading to the Hospital

Many of you know that Mira's oxybutynin (the medicine to keep her bladder relaxed) was recently increased by almost 3x the amount she was on, two weeks ago.

Last week, the first week after her medicine was increased, she seemed to be tolerating it well, and it seemed to be doing its job. She wasn't saturating her diapers as much, and we were getting higher residuals (the amount of urine obtained during a catheterization). But as of this past week, the second week of her being on the higher dose, she started showing some of the negative side effects of the oxybutynin. Her mouth and lips would get really dry. She was more constipated than usual. After getting her oxybutynin, her skin all over her body would get red, and her cheeks would look wind-burnt. She also seemed like she was having a really difficult time regulating her body temperature. For instance, her feet and legs would be really cold, but her back would be so hot, it felt like your hand should be burnt from touching it.

She wasn't showing too many of these symptoms until Monday night. Monday, early evening, shortly after her mid-day oxybutynin dose, some of these symptoms occurred at once, which had not previously happened. Her skin was red all over her body, she was really irritable and uncomfortable, her cheeks, mouth, and lips were dry. And her internal temperature was slightly high, 100.0 on the dot. She had not previously had a fever correlated to her oxybutynin, but I gave her some Tylenol. Within a half an hour, she was fine. But throughout that night, it was seeming to me like she wasn't having bowel movements like she normally does. 

Then Tuesday morning, she got her oxybutynin around 8 am. She only had a smear of poop in her diaper, which is unusual for her. At 9 am, Mira's pediatric nurse, Sheila, arrived for her shift, and when she picked up Mira, Mira cried out like it hurt her to be moved. She did it again each time for the next couple of hours. By noon, she started getting really lethargic, and Sheila and I noticed that she her fontanelle (soft spot) was getting harder. Her shunt site, which is usually extremely defined, was becoming less defined around the hardware, and Mira felt really hot to the touch, even though she wasn't running a fever. By 1 o'clock, when I was leaving to get Dustin from school, Sheila and I suspected shunt malfunction, and I started making the appropriate calls to get Mira to the hospital. 

I called my Dad so he could take Dustin, our 5-year-old son, and Aryanna, our 2-year-old daughter. 

As I was getting Dustin from school, packing up the kids, and waking up Joe (as he had just worked the night before); Sheila was packing up Mira's bag, and getting her ready to go.

During this time, Mira was becoming less and less responsive, and was over all difficult to keep awake. 

I called down to Children's hospital, and asked if she should be life-flighted from Greenville. 

They said that if I thought she'd make it, to just head down, but if anything changed during the drive, I could call and have emergency response meet us on the Interstate. 

So we threw everything in the car, and off we went to the hospital.

Updates

I just realized that my most recent blog post was a while ago when we were waiting to see if Mira was going to have emergency surgery. Thank God, she did not have surgery. The issues resolved after we got her bowel movements under control. She now takes miralax once a day in one of her bottles. This keeps her regular, keeps her internal pressure down, and keeps her shunt working properly. Seriously, though, who knew constipation could be so horrible? And she wasn't even extremely constipated. It just turns out that with her, if she doesn't have a bowel movement at least once a day, her shunt gets backed up, which causes the ventricles in her brain to swell. At least we know what the cause was, and we know how to avoid this problem in the future!

When we were in the hospital, though they decided to do some routine tests to make sure everything else was going smoothly. One of the tests they did was an ultrasound of her kidneys, ureters, and bladder. The test results revealed that her ureters, going into her kidneys, were dilated, which indicates the pressure in her bladder is still reaching dangerous levels, even with her being on the medicine that relaxes her bladder and being catheterized every 4-5 hours. With this information, and the weight she as put on, we have now changed her bladder care plan. So she was getting cathed every 4-5 hours while she was awake, and she was also receiving 0.2 mg's of oxybutynin three times a day. The schedule now is that she gets cathed every 3 hours while she is awake, and that she receives 0.5 mg's of oxybutynin three times a day. This new schedule ensures that the pressure in her bladder is staying low, while also trying to train her bladder to function normally. 

OH! We also only have to wear her hip abductor on her at night now! No more half of every day, and all night long, just at night while she sleeps! Her hip is in the socket now! It's still a tad shallow, but nothing like it was! It should resolve itself as she grows, and we may never have to face hip surgery! Yay!

We are also getting ready to add occupational therapy to her weekly schedule. She already does physical therapy meetings once a week, and we do her physical therapy with her every day, but now that she's interacting with items, and playing with her hands, and becoming incredibly alert to her surroundings, occupational therapy wll benefit by really helping her develop those fine motor skills!

So those are the changes in her treatment plan, and the care that has altered in our every day lives, but she is just doing fantastic! She's so happy, healthy, and beautiful!

We Shall See...

Right now is a lot of just waiting to see...

It turns out, they only scheduled Mira for shunt surgery for Friday morning as a precaution. Dr. Greene wants to be sure that, if anything is revealed on Thursday indicating a malfunction, Mira already has a surgical slot available. So as of this moment, nothing is indicating that she needs surgery. We will reassess that option after obtaining new scans and lab results on Thursday.

As for her hip, I am waiting for the head of Ortho to review her hip ultrasound results and call me back. His secretary said I should be receiving that call later this afternoon. So right now, I'm just watching and waiting, and we shall see over the next few days what the results are for everything.

Scared to Sleep

With Mira clearly having problems, and not knowing the cause of those problems, I'm scared to even sleep. What if I'm asleep when her condition worsens? What if I sleep away the window of opportunity one has to get help when a shunt malfunctions?

This is why last night I slept with a stethoscope in my ears, listening to her breathing. This is why I only got a total of three hours of sleep last night. And this is why I can't bring myself to crawl into bed now. Because I'm afraid to go to sleep and take my eyes and awareness off of her.

Tonight, while I was eating dinner with the kids, I got a call from children's hospital OR scheduling team to confirm Mira's shunt surgery on Friday morning. Problem is, Joe and I were never informed that Mira is scheduled for surgery, let alone that it was even on the table. Now I have to wait until tomorrow morning to find out what exactly is going on. Does she need surgery? Did they find something on her scans that indicates a problem with her shunt? And why the hell was OR staff informed of my daughter's possibly surgical condition before I was?

We've been on high alert since yesterday. Watching everything she does. Looking for any symptom known correlated with spina bifida, hydrocephalus, chiari, or shunt problems. We've been logging everything. How much she eats, how much she urinates and poops, cath volumes, head circumference, and neurological deficit indicators. She has seemed okay, but something still seems off.

Then tonight, as our pediatric nurse was leaving, Mira vomited all over the both of them. Not spit up... Threw up. This could be one of two things... She is adjusting to the prune juice we've been having to give her,or her shunt is malfunctioning. She is sleeping now, but I'm watching her and checking her constantly.

If anything, and I mean absolutely anything, makes me lean towards shunt malfunction, I will be calling an ambulance and demanding that a paramedic escorts Mira to children's hospital. If I think she is encountering a problem, I will not wait until Thursday morning for her to be seen, assessed, and treated, because with shunt malfunctions, Thursday morning could be too late. I'm not putting my daughter's life on the line for scheduling purposes. So it's high alert time! Every neuron and nerve ending in my body is standing at attention! And I'm scared to death to fall asleep.

Praise God!... And Prune Juice!!!

She finally pooped! After giving her bottles with prune juice in them since last night, she finally pooped. And not a rock hard nugget that causes all the pressure, but some normal, disgusting, foul smelling, baby poop! Praise God, and prune juice!
After she pooped, her soft spot was a little softer. We're still on high alert, watching her every movement, checking her soft spot, shunt, back, eye reaction to light, tummy bloating, bowel sounds, and level of alertness. But, she's smiling, cooing, eating, and (finally) pooping!
I think we're going to be okay to wait until Thursday for her next head scan and meeting with Dr. Greene. Prayers for good news, no faulty shunt, and no surgery! Prayers that all it took was a couple bottles of prune juice to avoid a life-threatening complication. How beautifully simple, prune juice, and how incredibly grateful I am to have had the privelage to change that disgusting, massive, relieving, mess-of-a-diaper just a little bit ago! So again, praise God, and praise prune juice!

Did I Fail Her?

Two weeks ago, we had a hospital stay for three days because Mira was not gaining any weight. We tried everything to get her to gain weight, but in the end, I had to quit breast feeding and switch to formula. Breast milk contains roughly 20 calories per ounce, no matter what a mother eats or does not eat. No matter how much I nursed Mira, she was not gaining weight. To get her to gain, we started supplementing formula three times a day. Even that did a number on my supply, and I was barely able to nurse at all. After about a week of that, I dried up almost completely, and we started exclusively formula feeding.

I was sad, because I was not ready to be done nursing. Mira is our last baby, so I will never again be a nursing mother. However, I felt it was the right call when I saw her gaining weight by the day, getting stronger, and truly thriving. We did the best we could, too, by getting organic formula and glass bottles. 

But now, since becoming exclusively formula fed, she's been incredibly constipated with extremely hard poop. This might be what is causing her cerebral spinal fluid problems now, because of all the extra pressure in her bowels. Granted, I could not see this complication coming... I know she needed to start gaining weight, and we did what was best for her at the time. This was an unforeseeable side effect. But I can't help but to feel like I failed her.

I know it's not healthy to think that way, and I'm not moping around in my own incompetence as a mother. But, as a mother, I have a few jobs: birth healthy babies, nourish those babies, care for those babies, and love those babies.

My body failed to build her properly, for whatever reason. I was unable to develop her spine the way a baby's spine should develop in the womb. Thus, spina bifida, and the baskets of other problems that come with it.

I was unable to nourish her the way a nursing mother and baby should experience. Mother's milk is supposed to always be best... but mine was not. I could not sustain her life with my milk. I could not strengthen her. I could not grow her correctly in the womb, and I could not grow her correctly with my breasts.

And now? Now she is facing things that no person should have to face. That no baby could ever fathom or deserve. All because my body failed to do what a mother's body is supposed to do. It hurts. It hurts on such a deep and personal level because I know, that if I had a choice, I would give her my spine. I would give her my nerves, my legs, my bladder, and my brain. I would make them from scratch, I would cut them from my own body, if it could possibly help her, but it can't. 

And while this martyred, self-loathing might sound dramatic, or morbid, or wrong... I also think it's okay. Because that's what a mother does. A mother looks at herself, and everything she does for her children, everything she has done for her children, and always wants to do more. And while I hate that my body did not provide what Mira deserved from me, and it hurts that I was insufficient, and it makes me incredibly sad, I will not be ashamed, because I know, that if given a choice, I would give her everything. And that's what mothers do. They beat themselves up, they pick themselves up, and they do everything they can for their children.

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! 

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.

6/6/13 Therapy

Today was our first in-home therapy session with the therapist from early intervention. His name is Mike, and he works so very well with Mira. He's very kind to Dustin and Aryanna, as well, and I get really good vibes from him.

Today he showed Joe and I three stretches for her foot, one massage for her legs, and one massage for her back.

The three stretches for her foot, which we hold each stretch for 30 seconds, will help stretch the tissue back to the proper position on her club foot. The massage for her legs, which is just very gentle rubbing, starting from her feet, and rubbing up towards her thigh, allows to help her blood circulate back to her heart. This is why you never massage an extremity away from the heart (which I did not know until today). You are always supposed to push on the tissue in the direction of the heart to help circulation. So we will always start at her foot, and push gently up to her thigh, on all sides of her legs. This will also help the process of trying to awaken some nerves in her legs, and could help her develop some sensation in her lower extremities. The massage on her back is where we tap with two fingers on both sides down her spine. Then apply pressure, using those two fingers, on both sides down her spine. This causes a reflex reaction to the muscles, and makes Mira lift her head while on her belly. Effectively helping her strengthen her muscles and utilize tummy time to the fullest! 

I'm so happy to be learning more ways to help her! I'm very excited to think that some stretches and rubs for a few minutes each day could help her; even if it only helps in the most minuscule ways, it could still make a world of difference!

Getting Help

One of the ways we were trying to get help was seeing if we qualified for a pediatric nurse to care for Mira once I start college back up in less than a month. Unfortunately, today we found out that insurance denied us, so we are not eligible to receive help from a pediatric nurse. While this would have an amazing peace of mind to have, we will find a way to make due without that type of help.

We have, however, been approved for early intervention services, and Mira's new physical therapist, Mike, will start coming to our home to work with us this Thursday. He'll come to our house once a week and teach us therapies to implement in our daily routines that will help Mira gain the strength she needs to meet milestones at the proper times. Like improving her core body strength so she can sit on her own, and improving hand-eye coordination so she can reach for, and play with toys. I'm super excited to have a professional work with Mira and teach Joe and I how to help her to the best of our abilities!

Another way that we are exploring to receive help is by filing for social security for Mira. I've addressed how quickly things can add up, and we're barely scratching the surface of the needs she will have on a long-term basis. This is why we filed for social security. My meeting to see if we qualify is tomorrow morning, so I spent today filling out paperwork, organizing medical records, getting our proof of income/residency in order, sorting through medical personnel contact info, and gathering it all for the appointment tomorrow. Maybe we could use this to pay for a pediatric nurse if it became necessary, or save some money in a fund for her to explore treatments not covered by insurance later down the road. Either way, prayers for a good outcome are always welcome! 

And the most wonderful way we're getting help right now is through our loving family and our wonderful community! My sister and brother-in-law started planning a benefit dinner for us a while ago, which was intended to be a surprise. But she couldn't keep it from us for very long because all of our family members hopped on board to help make it happen. Our community has all pitched in to donate items to raffle, and show their support by RSVPing. It's been really amazing watching how caring everyone is, and the dinner hasn't even happened yet! It's not until June 15th, two Saturdays from now, and I'm so excited for it! I'm so blessed to have so many people that love and care so deeply for Mira! Children are all miracles... Mira just had to prove it in ways many people do not, and to see the love, support, and genuine care from everyone means more than words could ever fairly or accurately describe. I love you all, whether you donated, are attending the dinner, sent up a prayer, or even had a compassionate thought go through your head for my baby... I love you all!

Yay!... Wait... I'm Scared...

Monday, 5/27/2013, was the day we had the all-clear from the doctors to start putting Mira on her back. I've been so excited for this day, this milestone of hers, for what seems like forever, but has only actually been six weeks. I was excited about being able to put her in a real car seat instead of that flimsy car bed she had to ride in since she had to be laying on her belly. I was excited about being able to put Aryanna's old swing together and let Mira use it now. I was excited about being able to lay her down without being terrified that she would roll herself onto her back and possibly cause damage to herself. I was excited about being able to stop putting her diapers on backwards, and being able to stop using the butt flaps now that her incision is healed over. I was so very excited for this day for weeks, and so excited about the possibilities of something so simple, her being on her back, until the day arrived, and it was time to actually do it... Then I was terrified.

When Monday hit, and I realized I could put her on her back, I spent the first half of the day pretending today wasn't the day. I was so scared to actually do it. I was so scared that she wasn't ready. What if she wasn't? What if I hurt her? What if she didn't like it? What if it put pressure in a bad spot on her and caused her pain? What if she choked because she's not used to being on her back and doesn't know how to react if she spits up? ... I was terrified.

These milestones are miraculous and make me so proud of her every time she crosses one, but I'm also so scared to change something with her because I'm so scared of screwing up. Like when they told us we could quit cathing for now. I kept cathing anyways. Not as much, but I still did it every couple days until I was absolutely convinced it was no longer necessary. That point was a huge milestone for her... Peeing on her own... But I was terrified about the nagging feeling of 'what if she's not ready? What if I hurt her? What if, by crossing this bridge, I cause her irreparable damage?' So while I'm so excited and proud to watch her cross these milestones, it's also very scary. 

So I text my friend, Katie, who has a daughter about a month older than Mira, with spina bifida... Miss Lila. Joe and I got to meet little Lila before we gave birth to Mira, and Lila's parents, Bob and Katie have become very valuable friends. So I text Katie and asked her what she did when they gave Lila the okay to be on her back. Katie said they absolutely put her on her back and they couldn't wait! Lila did great, and they were also so relieved to get her out of that stinking car bed and into a nice, secure car seat.

So, I put together the baby swing, and put Mira on her back. I swear I didn't breathe for ten minutes! But my fears turned out to be silly because Mira was so comfortable that she ended up sleeping for four hours in that swing! It's now her new favorite place. She's become more alert since being allowed on her back, she sleeps better, and she's never choked. This also opens up a lot more physical therapy doors because the options were limited while she was belly confined.

My overprotective and overly cautious side had me scared out of my wits to let her finally be on her back, but it turned into another milestone where she never stops amazing me and filling me with unconditional parental pride. 

Letting Loose

May 25th was the day some friends of mine and Joe got married. We had been planning on attending this wedding since before Mira was born, so we figured this would be a good time to let loose and spend a child-free weekend together. This would mean letting Mira be away from me for the first time. A very bitter-sweet concept.

While a child-free weekend sounds fantastic, don't get me wrong, it was very stressful thinking about being away from her. The idea of not being there to watch her constantly, or possibly throwing off my milk supply after working so hard to get it back where it needed to be, or what if something went wrong and I wasn't there? The idea was kind of terrifying. What helped? It helped knowing that I wasn't entrusting her to just anyone. I was entrusting her to my sister. Anyone who has followed our journey knows that my sister, Tammy, is not the ordinary family member. She's been with me since day one. She's my best friend. She loves my children like her own. And she trained with Joe and I in Pittsburgh to learn how to properly care for Mira. She is, without a doubt, the only person other than Joe and myself that I would trust to know how to correctly care for Mira.

The wedding was on a Saturday, so we dropped Mira off at my sister's house Friday night. We said goodbye a hundred times, but kept hovering anyways. It was hard to leave, but the break was also welcomed and relieving. Again, I couldn't have left her with anyone other than Tammy, and I was confident that my sister and Mira would be just fine. I was right.

I never text or called my sister once, and she never had to text or call me either (other than to send me adorable pictures of my little beauty hanging out with my wonderful nieces). The wedding was absolutely wonderful! I may have helped myself to a little too much wine, but the wedding was the most beautiful ceremony and reception I've ever attended! The bride and groom were perfect, and more importantly, perfect for each other; and Joe and I had a wonderful weekend together! 

As much fun as the weekend was, and it was lovely to relax while getting a break, I honestly couldn't wait to get the kids back! Reuniting was amazing! Even after only a couple days, I missed them so much, and it felt foreign to be without responsibility for a good 48 hours. 

Pediatric Nurses

One of the things I have mentally struggled with is the idea of needing someone to watch and care for Mira when Joe and I are not available. I couldn't possibly trust a daycare center or a random baby sitter with her needs. It's by no fault of their own, it's simply circumstances that would be out of their depth. They wouldn't possess the training or skills to catheterize her if need be, clean her incisions, keep irritants away from her skin, or let alone understand how to look for all of the symptoms that Joe and I have to constantly be aware of.

Because of this, I've been almost dreading June 24th. June 24th is when I'm scheduled to start college classes back up. I have three more classes until I obtain my first degree. Once I have it, in order to stay on track career-wise, I should begin interning or volunteering during the next two years while I work towards my next degree in order to obtain the experience needed to qualify for my certifications. All I have been thinking about is how in the world am I going to take care of three children, meet Mira's needs, take care of our household, keep up with my classes and start an internship??? Especially when I have no idea who I would even trust to watch Mira on a regular basis?

I reached out to some friends on Facebook that all have special needs children, and through them, I was referred to a nurse that works for an in-home pediatric nursing program. I messaged her, and she was so helpful! She gave me the contact information for her coordinator, along with her own personal contact information so we could speak, as well. I called the coordinator, and she said "I'll be out to see you tomorrow!" I couldn't believe how easy it was and how wonderful every person I spoke to was!

So, the coordinator and a senior nurse came to my home today and we had a little meeting that basically discussed all of Mira's needs, how often I would need a nurse at the home, they did a small exam of Mira to document her incisions, and obtained our insurance information. They'll now do all the footwork for me! They'll obtain the doctor referrals, they'll contact insurance, and they'll let me know roughly at the end of next week if we qualify. I asked if she thought, realistically, whether or not we would qualify through the insurance companies to receive services, and she said that in her experience, she thinks we will!

The peace of mind I would have knowing that a trained medical professional is watching Mira would be such a relief! I could actually study without worrying about her. I could start interning to stay on track to be able to provide for my family in the near future! It would just be wonderful! So any prayers that anyone wants to send up for this to work out would be greatly appreciated by yours truly! 

Evaluation

Today was Mira's evaluation through early intervention. The point of it was to see how she responded to various types of stimuli to obtain her "score" compared to how other children do at her age. She's only a month old, so expectations are limited.

Honestly, she did fantastic! Her upper body strength is amazing, she's very good at following or tracking faces, she's eating well, sleeping well, and has a great grip.

The only thing she didn't respond to was ringing a bell. However, they told us this is actually really normal for babies that spent a long period of time in a NICU. A NICU is filled with high-pitched beeping, lots of noise, lots of activity, and lots of people coming in and out at all times of the day and night. So while under normal circumstances, the raining of a bell would be alarming to most babies; babies that spent a lot of time in a NICU typically don't respond because they are so accustomed to that type of noise. 

The evaluation was actually perfect timing. Mira was wide awake, but not upset, so she was in the perfect state and temperament to go along with showing off her skills for the early intervention coordinator and the therapist evaluator.

Picking up your head and looking at your Mother's face might not sound like much to most, but I was very proud of her! After everything she's been through, she is so strong physically and mentally, and she's such a happy baby! She just cuddles so nice, or she moves around and looks around, completely content, taking in the sights and sounds! Everything she's been through is certainly defined as traumatic, yet she shows not a single sign of being traumatized. She's not restless, she's not difficult, she's not unhappy or inconsolable. She certainly has many challenges that need addressed that most people don't even think about, but she takes them all in stride! She's so resilient, and I'm just so incredibly proud!

Aryanna was napping during the evaluation, but I was also proud of Dustin. He's very curious about everything going on with her, and he's such a great big brother to both of his sisters. He was asking our guests questions and showing them his action figures, but he listened so well every time I told him that we needed a few minutes to watch Mira do something or for the adults to discuss something. He would just go sit in his chair and wait, and he was so helpful and well-mannered.

So while early intervention is designed to help bridge the gap in developmental delays, or to avoid gaps entirely, I must say that I don't think she'll need too much help. I have an overwhelming amount of faith in my children, in their will power, their strength, their intelligence; and I am one proud mamma!

Revisiting The Past

While I've shared my blog with you all a hundred plus times, sometimes I forget what all has happened up to this point. So I decided to go back and read some of my old entries. Wow. Re-reading my own journey was incredibly emotional! The high points and the low points, and as I'm reading them, I get put right back there in reality.

Like the moment I had to let the transport team take Mira after she was born. Only spending a minute with my new baby, and having to let her go. Let her go to get surgery, let her go away from me, let go of her skin which I barely got a feel for. That was one of the hardest moments of my life.

Or when I heard she came through her surgery! When the wait was over, and even though I wasn't with her, not at the same hospital, I knew my baby girl made it through her surgery! That she was alive! That Joe was with her! That the hurdle had been jumped and she was okay! 

Or even way back, at the very beginning, when Joe and I were just a couple that were going in to get a "routine sonogram" done. Just two people hoping to find out the gender of the new addition to our family. But instead, we were alerted to the reality that something was "wrong" with our baby, and we had to wait an entire weekend just to find out what it was. Was it life-threatening? Would she be healthy? Would she be impaired? What exactly is wrong? The only thing I could do at the time was go find my big sister at her work, and cry on her shoulder. We spent all weekend shooting possibilities at each other. Joe thought maybe Down syndrome? I remember saying the words "spina bifida" and having no clue what it actually meant. And when we finally met with the doctor, and had our suspicions confirmed, spina bifida, and Joe and I just held each other in the exam room, and cried.

Or when I got to hold her for the first time! When most of the tubes and wires were gone. When I got to feel her weight, and put her skin to my skin, and smell her hair! When she finally felt like she belonged to me instead of to the hospital. When I finally felt like I was doing my job as a Mother because I could hold her, and feed her, and change her diaper! It was amazing and relieving, and she was so beautiful because I could finally see her whole face at the same time since she didn't have to lay on half of it, because I could hold her! My beautiful bundle! My precious gift! My miraculous Mira Cole!

So yes, while I've shared my blog over and over, and posted the link on my Facebook a hundred times, even I forgot where we started, and the highs and lows, and the emotions, and the events. But if I can toot my own horn, I must say, it's not a bad read. And if I can toot Mira's horn, I must say, wow! You really can do anything, sweety! You can do anything!

Rough Patch

One topic I haven't hit on yet is finances, but I feel like being honest about it is the best way to give accurate information to others that might have gone through this, are going through this, or will go through this. 

When you have a child that has very particular needs, small things add up, and they add up quick. For instance: Mira has absolutely no hold of her bowels, so she poops at a constant rate, requiring constant diaper changes. We've gone through more diapers in her few weeks of life than I can even count. And we cant use cloth diapers because they do not pull the mess away from the skin the way disposable diapers do, leaving a risk of infection on her incisions and actually making her diaper rash worse! Then you add how sensitive her skin is and you're left with only being able to buy certain products. We have to get a particular kind of baby wipe that doesn't have alcohol or chlorine in it. A special kind of diaper rash cream. Very particular types of clothes and blankets. Finding baby socks that don't contain latex has been nearly impossible. All of the medical supplies that aren't covered under insurance, like the sandwich bags to make her butt flaps. Having to replace the latex items in our home, like tape, gloves, Tupperware, and more. The travel costs of always going to see doctors. Not to mention all the work Joe missed during her surgeries and having to take off work for her appointments. Thank God I'm a die hard fan of breast feeding, because I couldn't imagine adding the cost of formula on top of everything else. While I'm not complaining, because this is what our daughter needs and we're fine with doing it, the reality is that it's all very,very expensive.

The reality is that you can't make $1500 worth of bills come out of a $300 paycheck from missing almost two weeks of work during her surgeries and hospitalization. The reality is that once you start playing catch up with your bills, it takes months to get caught back up. The reality is that we even planned for this and paid most of our bills months in advance before she was born. But, the reality is that this is an unavoidable part of having a baby with special needs. 

However, it's a rough patch. It's called a rough patch because it goes away. This will pass, things will get easier, the bills will get paid, and there's always light at the end of the tunnel. We're blessed with friends and family that have helped in many ways. They're planning a benefit dinner for Mira as we speak. Others have held fundraisers through their personal businesses. Family members have brought us groceries and babysat the kids for us so we weren't paying for child care during doctor visits. And some have simply stopped by to help me with housework while I sat on my porch, enjoyed a cup of coffee, and was simply able to breathe. 

It is all so overwhelming. Making sure we're taking care of our family the best we can is overwhelming, and the last thing you want to have to care about during all of it is money; but we live in a world that requires it. The best advice I can give is to plan. Plan for it. Plan for the loss of income, plan for the one pair of baby socks that are going to cost 20 freaking dollars because they're latex-free, plan for spending more on a baby outfit than you've ever spent on your own, plan for falling behind on your bills; BUT don't feel like a failure when your planning only does so much. Don't get discouraged when you inevitably hit the rough patch. It doesn't make you less of a parent to fall behind. It doesn't make you a failure to run into things that you didn't know to plan for. It hurts, it makes you feel like you're less, and it's embarrassing to beg your landlord for leniency; but it's not your fault, and there's only so much you can do, and this is the lesson I'm learning during this rough patch. This too shall pass.

First Clinic Appointment

Children's Hospital has spina bifida clinic. This is where you have one appointment, but all the relevant doctors come to you. Neurology, urology, physical therapy, orthopedics, rehabilitation, etc. Our first clinic appointment was yesterday, and I am thrilled!

Mira not only gained almost a pound, but we get to temporarily quit cathing her! That's right, I said we get to STOP cathing! Joe and I agreed that we are going to cath her once a day to make sure she's not retaining urine, but if we find we're not getting a larger amount, then we get to stop entirely! Not only that, but we also get to discontinue her daily antibiotic.

She's doing so well in everything! Neuro doesn't even want to see us again for another three months! We have to go down for tests and things like that in between, but as long as we do not become concerned about anything, we will not need to meet with neurosurgery for a while!

Orthopedics does not want to proceed with casting and surgeries on her foot yet. They want to wait until Mira is entirely healed from her current traumas before they potentially cause more trauma to her body.

Urology is having us get a CMG done at the beginning of next month. This is a test that reveals the pressure levels in her stomach and bladder. As long as everything revealed is healthy, we can discontinue cathing for years! Until she's possibly 5 or 6 years old!

Physical therapy will be done in our home with the early intervention services, so we did not even meet with them yesterday at her appointment.

A few things we found out: Mira is eating 4-5 oz. bottles currently, and that seems like an awful lot for a less than one month old. We asked about the volume because she's not spitting up a lot or showing signs that would suggest over feeding. They said that while this may seem like a lot, that often the body requires additional nutrients to recover from everything she has been through. So she's not seeking too much food; she's just doing what her body is telling her she needs. And that's additional nutrients to help her recover.

Something else we found out, which may be the only slightly negative occurrence. Mira acts like she's falling all the time! She will wake herself up from flailing her arms out, she does it when she's perfectly still, when she's moving, when she's being held, when she's laying down, etc. No matter the situation, or how stable she may or may not be, she very often gets startled and flails her arms like she's going to fall. Joe and I have wondered if, with everything that could have possibly compromised her head, maybe her sense of balance has been corrupted? We asked neurology about it because we're not sure if this is simply her finding her footing in the world, or if something is actually off. Neurosurgery said that since it's so early, it's impossible to tell; but, there is something that spina bifida children can be prone to called spasticity. Spasticity involves involuntary regular spasms. So, only time will tell wether Mira is simply new to the world and startled at times because of it, or if she is actually having spasms that are beyond her control. We will see as time goes on.

In the mean time, she's doing incredibly well! Spina bifida clinic is so convenient, and I can't wait until the beginning of June to find out how her bladder and stomach are doing! We've also been nursing a lot more. I've been letting her eat on demand to build up my milk supply and get her more used to the breast. If she keeps doing as well as she is, we may be able to do away with pumping and bottle feeding entirely! Woo-hoo! 

Our entire schedule has changed now! With her not needing cathed all the time, no antibiotic to give, and letting her feed on demand; it's like she gets to actually just be a newborn! She gets to eat when she's hungry, and sleep! No more waking her up to cath her or feed her or give her medicine! She can simply do what a baby is supposed to: eat, poop, sleep. End of list!

Early Intervention

Early intervention is a program in my area that is for children 0-3 years old. The program consists of having a variety of therapists come to your home and work with your child to help with or try to avoid any ways they could fall behind developmentally.
Today I was able to speak to the representative and set up our in-home appointment for next week. I am so excited about this opportunity! Not only for Mira, but for the entire family. The therapists listen to what goals you want out of the process and help with what you want to see accomplished. One of the things I've been struggling with is trying to figure out the family dynamic. Sometimes I'm unsure of how to get the entire family to mesh and function together. I'm trying to figure out how to include Dustin and Aryanna in Mira's schedule because I don't want them to feel like she is more important than them. Yes, she has more needs than they have combined, but none of my children will ever be more important than another. However, sometimes I feel like I'm excluding them to the point where they might think she's more important than them.
Because of this, one of my goals in working with the therapists in our home is to find our family fit. To figure out how we will all work together in meeting Mira's needs so that we are one functioning family instead of a bunch of roommates with different goals and different lives. I want my children to be as close as my sister and I are. I want to make sure all of my children feel included and important and loved. I want to see them working together and feeding off of each others' accomplishments. I absolutely do not want my family to feel divided or insecure. So I'm really hoping to achieve common ground and family-felt understanding. I've learned that spina bifida really is a team effort, so that's what I'm hoping to accomplish, team work and feeling connected.
I can't wait for our meeting next week, and the week after that is Mira's in-home evaluation. After that is when the work will start, and I honestly can't wait! I encourage everyone who has a child with any type of special needs to look into possible programs in your area. All you can gain from it is knowledge, and that's never a bad thing!

False Alarm

Today I had to come to the realization that I'm going to have to adjust to being scared and clueless.
Last night, all at once, multiple things started happening that caused me to be concerned for Mira. While none of them were immediately life threatening, they still scared the daylights out of me, and I was scared until we took her to the doctors today just to find out everything was fine.
So, right before her 10pm cathing, my sister was feeding her and looked at her abdominal incision. Right in the middle of the incision, it looked like it was coming apart. The suture over the middle part had dissolved, even though the rest of them are all still intact. The skin, which is completely flush and together on the rest of the incision, was pulled apart and I couldn't see how deep it went. I wasn't going to pull to try and see and possibly cause damage. So instead I pushed around the incision gently to see if anything could come out of it. No drainage was coming out, no blood, so that was a good sign, but I still did not like the way it looked. I have never been a fan of her abdominal incision because she's constantly on her belly. This has caused her abdominal incision to always be red and irritated. So while the rest of her incisions look really healthy and are completely normal colored, this one has always been red and swollen. Mommy's not a fan.
Then, at her 10pm cathing, which we're still barely getting any urine out per cath (yay!), debris came out in her urine. I've never seen this before, and this can be one of the signs of infection. At this point, I was feeling the urge to rush her into the emergency room, but I knew that would be over-reacting. So I put the urine in a sealed specimen cup, marked it, and put it in the fridge. I documented my concerns for the evening in Mira's log book, and made a mental note to call Georgia from the spina bifida clinic in the morning and call her pediatrician to see if they could get us in to look at the incision.
So this morning, I call the pediatrician about the incision, and they said they could see us in the afternoon. Then I called Georgia to talk about the incision and the urine. Georgia said sediment in the urine is actually really common, but to only be concerned if she is also not eating well, not peeing well, and/or is running a temperature. I had been taking her temperature regularly, and it was in normal limits, so everything there was actually okay.
We went to the pediatrician's office where they looked and it, and said it was a beautiful incision, completely intact, and healing very well. Apparently the part that is split open is only the very top layers of skin that are swollen. Once the swelling goes down, we will be left with a completely flush, no gaps involved, barely-there scar.
So, by the time this morning hit, I was getting ready to rush her to Pittsburgh. I felt like something could be terribly wrong. But the main reason I felt that way is because honestly, I was just so unsure! It scared me to death to think that all of the scary symptoms, and bad things that could go wrong, and things to look out for all the time... Well, the thought that one of those things could have been happening struck fear into me like no other. It made me so unsure of myself, made me feel like I have no clue what I'm doing, I was questioning myself about everything I may or may not know here. Am I being too thorough? Was I not being thorough enough and that's why something bad is happening? Are they gonna think I'm a hypochondriac? Are they gonna think I neglected obvious signs and that's why this happened? Is this something serious? Is this nothing at all? ... Honestly, I had no clue!
But by the end of the day, I think I actually did exactly what I should have done. I contacted the right people. I got her checked out. She's okay, everything's okay, and it's all going to be fine. So even in my panic of doubting myself and feeling completely helpless in my own panic, I still was capable of doing what she needed me to do for her! I still functioned, I still got her to the doctor, I still asked the important questions, and I'm still not throwing that urine sample away until there is no doubt in my mind that she is 100%! Too thorough? Maybe. But I'd rather provide too much information opposed to not enough!

For Mira

So people say you're different
I say they're not to blame
Society teaches others
We're all supposed to be the same

How glad I am you're different
Miraculous in the least
You've fought battles in your body
From your head down to your feet

What is spina bifida?
It ranges drastically by far
And while it does not define you
It's part of who you are

Wether you walk, crawl, or roll
You'll show inspiration to the rest
So while, yes, you are different
You will never be less

While your struggles may be more obvious
We all have struggles too
We all need some miracles
And that miracle is you

From Dustin and Aryanna
And from Daddy and Me
Along with God and all the people
Whose support is always seen

We love you, Mira Cole
And that will never change
You are Mommy's hero
You inspire me every day

I love you, Mira Cole McGuirk
Love, Mommy

Awareness

While we all know that a pink ribbon means breast cancer awareness, I recently found out some new ribbon colors and their meanings.
Pale yellow ribbons are exclusively for spina bifida awareness.
Yellow ribbons mean many things, but spina bifida and hydrocephalus are two of them.
Purple also has many meanings, and the arnold chiari malformation is one.
While I don't yet know how our lives will play out or how each of these cureless conditions will impact my daughter throughout her life, I do know that Mira and everyone like her deserves for me to spread awareness. So I will get some yellow and purple ribbons, and I will wear them proudly!

Meeting Mira

Once Dustin and Aryanna came home, the next thing step was for them to meet their new baby sister. Dustin has understood that he was getting a new baby sister for a while now, and he's been very excited. But Aryanna just knew that Mommy had a big fat belly, and it was fun to poke my belly button. So now, it was time for all of my children to meet each other.
I held Aryanna while Dustin stood beside me and we looked into Mira's crib. Aryanna kept pointing at Mira and giggling, like she was a new baby doll toy and wanted me to hand her over. Dustin was cooing at her and saying "Awww" and asking if he could hold her. I told him he can't hold her yet, but he can touch her hands or her feet if he wants. He very gently reached into the crib and laid his one finger on top of her foot. I wasn't sure in that moment where this would be leading, or how they would handle how demanding Mira is for Mommy's time. But that's all stuff we'll figure out together as time goes on. Right now, it was just wonderful to have them all home and together.
Dustin was very curious and compassionate about Mira's incisions. He asked about her 'cuts' and said that Mira doesn't like cuts. He wanted to know why the doctors would do that to her. I explained that's why we were gone for so long, because Mira was sick, and the doctors had to give her cuts to make her better. He was okay with that answer. He also forgot about breast feeding, apparently. "Why are you feeding her with your boobs, Mom?!?!?" Lol! Then I reminded him that this is also how I fed him and Aryanna.
Aryanna is very curious about her, but doesn't yet understand how to be quiet or gentle, so I can't keep her too close. Aryanna is still at the stage where she thinks everything revolves around her, so she can't understand that she has to accommodate Mira.
All of this will be fine in due time, and right now, I'm just happy to have all of my children together, at home. The schedule is insane, meeting their needs feels like I'm running a never-ending marathon, and I'm trying to figure out how in the world I'm going to give them each the one on one attention they need and deserve; but my family is complete, and I wouldn't have it any other way!