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!

The Kids!

Mira came home on Monday, and Dustin and Aryanna came home on Wednesday. It had been just over two weeks that I went without seeing Dustin and Aryanna in person at all. We had FaceTime and pictures, but I have never been away from my children for this long in their lives.
Having them home makes Mira's schedule even more difficult, and I knew this was how it would be before the kids came back. I knew that they would be driving me up the wall within ten minutes. I knew that as soon as Dustin walked in the door, I wouldn't get a moments peace because honestly, he never stops talking. I knew that Aryanna would be difficult because she's about to start walking, and she's in a demanding phase where she wants everything her way because she's exploring her own attitude. I knew both of them would be constantly seeking attention in disruptive ways because they're not yet used to having a new baby in the house; especially one with Mira's constant needs. While I knew all this before the kids came home... I couldn't wait!
Two weeks! Two weeks may not sound like a lot, but it killed me. It broke my heart every time I talked to Dustin on the phone throughout that time, and he would cry because he didn't understand why we weren't all together. It killed me to see pictures of Aryanna and know how big she was getting, and know that I was missing it. It killed me knowing that every day they were wondering why we weren't home, and that there was no possible way to make them understand. So even though I knew I'd be ripping my hair out once they got home, I also knew that I'd gladly go bald for that reason because I couldn't wait to see them, and hold them, and answer Dustin's 12,000 questions, and pick up Aryanna in all her chunky glory even though I'm still post c-section and not supposed to be lifting her.
My sister pulled in the driveway, and I was already waiting on the porch. I walked out to meet them, and Dustin ran into my arms yelling "Mommy!" Aryanna smiled so big while my niece, Nikki, brought her over to me. She started pointing at me was saying "Ma!" in a way that sounded kind of like she was questioning wether or not it was actually me. I couldn't wait to scoop her up in my arms, and that's exactly what I did! It was so relieving... Finally having them home and seeing their plump little cheeks in person! Knowing that the waiting was over, and I wouldn't have to keep trying to explain to Dustin why him and Aryanna were getting shuffled around, and why Joe and I weren't home. That was all over, and I could hug them, and take care of them, and tuck them in at night, because we were all finally home! All of my children under one roof, my roof, and that was that.

Interesting

There are little things that we have to do with her that I don't realize would be interesting to someone who isn't familiar with everything going on with Mira.
For one, we have to put her diapers on backwards right now and fold them down to keep everything away from her back incision. Dustin graciously pointed out that I was changing her diaper wrong because he saw me put her diaper on backwards. Hahaha. I told him we had to do it this way to keep her cut safe, and he said okay, but I forgot that this might seem weird to someone who doesn't know any better. A backwards diaper.
Another thing that I found incredibly interesting that we learned in the hospital pertains to Mira's shunt. She has a programmable shunt. This means they can change the setting of how much cerebral spinal fluid flows through the shunt by using a magnet on the outside of her head. They don't have to go back in to change the setting and out her through another surgery. The magnetic field needed is called gauss. The interesting part is that there are other things that put out gauss, so we have to keep those things away from her head. The most interesting one is an iPad (which I'm using to update this right now). We have to keep iPads eight inches from her head. If they get closer than two inches to her head, it could change the setting on her shunt. Also, if we ever go anywhere with security checks, like a court house or airport, and they try to use one of those wands to check her, we have to stop them. The wand puts out enough gauss, just being passed over the body, to reprogram her shunt. So we'll probably try to avoid areas like this. The day would not go too well if I had to tackle a security guard in a secure area. I imagine my bail would be reasonable, but better to avoid it anyways. Mommy doesn't need a criminal record.
While I'm glad that if the setting on her shunt needs changed, they don't have to do another surgery jut to change it, but it's also scary that other things could reprogram her shunt, and we wouldn't even know until problematic symptoms occur. Cool, and convenient, and scary, and very interesting, nonetheless.

Awwwwwww!!!

Sucking her thumb for the first time!

Symptoms

With Mira's conditions, surgeries, and other specialty things going on with her body, there is a long list of symptoms and precautions we have to look out for and special measures we have to take.
Holding her: With her back incision, from the myelomeningocele repair, she can't have any pressure on her back. So when you hold her, you have to support her head, while watching out for her head incisions, and support her hips without putting pressure on her back. It sounds a little difficult, but it's not that hard once you get used to it. She can be on her side, but you just have to make sure she doesn't roll onto her back at all.

Latex allergy: While she does not currently have a latex allergy, that we're aware of, spina bifida babies are prone to developing a latex allergy if they are exposed to latex. Limiting exposure as much as possible is the best shot she has at not developing the allergy. If she can make it to adulthood without developing the allergy, chances are she won't ever develop it. So for now, we have to treat her as if she's allergic to latex. All art supplies that aren't crayola contain latex. Crayons, markers, paints, etc. Balloons. Scratch off tickets. Clothing. Bedding. Baby mattresses. Anything that is rubber is latex. Anything adhesive that doesn't say "latex free" is latex, so bandaids and tape. Spandex means latex. Then there are foods that contain some of the same genetic make-up as the rubber plant, which is latex. Those foods are bananas, kiwis, avocados, bubble gum, and water chestnuts. Also, when she gets a little older and we go out to eat, our first task at any restaurant will be finding the manager, and asking "is your food prep done with latex gloves?" Anything labeled "hypoallergenic" by law is not allowed to contain latex, which is why we had to buy her a hypoallergenic baby mattress. Many baby mattresses are stuffed with foam that contains latex, or the cover of the mattress contains latex. One of the best ways to figure out what you can get for a child with a latex allergy is calling the manufacturers before you buy anything. Almost all products have a 1-800 number on them or on their packaging somewhere. Call the number before you buy the product. Heck, call the number while you're standing in the store, right there in the aisle, looking at the product in question, and ask if any part of that product contains latex. Doing your own research is the only way to be as thorough as possible. If limiting her exposure to latex is the only way to try and help her avoid another hurdle in life, that's what we'll do.

Club Foot: Her foot curves right in the center of her foot, which causes her skin to crease. We have to make sure those creases stay clean and dry because if they don't, it could cause skin damage. Since she has no sensation in her feet, she wouldn't be able to alert us to pain like other children can, so we have to check and make sure she doesn't have any sores since she wouldn't be able to tell if she did.

Lack of sensation: As I just explained, she can't alert us to harm done to her if a problem occurs on an area where she has no sensation. Lack of sensation doesn't mean lack of function. So say if she starts walking, because maybe she'll have the function to do so, but doesn't have sensation in her feet, so she can't feel them, and she steps on a piece of glass. Normally, you or I would acknowledge that we've stepped on a piece of glass, so we would take care of our wound. Mira won't be able to acknowledge that because she can't feel it. This means that when she's no longer a newborn, she is to be wearing protective footwear at all times. Hard-soled slippers in the house, actual shoes outside at all times, water shoes in the swimming pool, etc. if she's doing anything, she is to be wearing protection on her feet. We also have to check the footwear and her socks to make sure they're not causing harmful pressure points on her skin, or cutting off circulation to any areas.

Infection: Right now, she is open to the risk of infection all over her body. She has two incisions on her head (one from her temporary drain, and one from her shunt placement). She has one incision on her abdomen (from her shunt placement). She has one incision on her back (from her myelo repair). She is catheterized every four hours, leaving her at risk for infection every time she's cathed. And her belly button is currently at risk for infection because her umbilical cord stump is still on and she's confined to her belly at all times, so it hasn't been able to air out normally, causing it to bleed instead of dry up. The symptoms we have to always look for when it comes to infection is checking her incisions daily when we clean them. If we notice swelling, redness, or drainage of any kind, the incision could be infected. Also, of she has a fever or raise in temperature, we are to call her doctors immediately because this is usually the first sign of an infection. Any temp of 100.4 or higher means we need to call her doctor right now. After her incision heal, we would call if she has a temperature of 101.5 or higher, because then we would only be looking for infection caused by cathing.

Hydrocephalus/Shunt Malfunction: We have to check her shunt track regularly. You can run your fingers along her skin on her head and feel the tube of the shunt. If you can feel puffiness around the tube, that means the cerebral spinal fluid isn't draining through the tube like it should be. So we have to feel her shunt track all the time and just check to make sure we are feeling only the tubing under her skin. We also have to check her soft spot a lot. Her soft spot, when she's calm, should be flush with her skin and bouncy. If her soft spot is protruding or firm, it means spinal fluid is building up in her head again, so her shunt is not working properly. If the veins on her temples are really visible, this is a symptom of shunt malfunction. Also, if her cry becomes really high-pitched, that's also an indicator. Projectile vomiting (not just spitting up) is a symptom, along with loss of appetite and being lethargic. There is also something called "sun setting" which is a symptom of the hydrocephalus and the shunt not working. Sun setting is where her eyes aren't sitting in the middle of her eye sockets where they belong. Instead of her eyes being between her eye lids, her pupil won't be centered from top to bottom, it will instead be centered lower, to where her bottom eyelid is covering a part of the center of her eyes. So the area that makes up your eye color and your pupil, that circular area, will be drooped down to where it looks more like a sunset behind your bottom eyelid instead of bring up and centered where it belongs. These are all the symptoms of acknowledging that her hydrocephalus is bad, and her shunt is not working properly.

Chiari malformation type II: Only 5-30% of chiari malformations ever cause symptoms. But in case hers becomes asymptomatic, we need to know what to look for. A chiari malformation, if it causes problems, can effect the vocal cords, tongue movement, facial muscles, and respiratory function. The symptoms we'll be looking for includes: choking, coughing, gagging, milk coming out of the nose when eating, wheezing, and any other respiratory distress. While high-pitched cries are a sign of hydrocephalus, raspy cries are a sign of the chiari malformation. So if we notice that her little voice is sounding a lot deeper, that could mean her chiari malformation is compressing her vocal cords. Also, when she gets a little bit older, if we notice that she's constantly leaning her head back, that's usually a sign that her chiari malformation is causing compression. When they lean their head back, they are doing so to relieve the pressure it's causing, and we'll know that her chiari malformation is causing problems.

Tethered spinal cord: Its very likely that at some point she will have a tethered spinal cord because of the surgery she needed on her back. A tethered spinal cord is caused by the scarring that takes place in the spinal cavity. Symptoms of this are back pain, leg pain, changes in bowel/bladder function and movements, spine curvature/posture, and excessively turning her feet in and out. If her spinal cord becomes tethered, she will need surgery to fix it.

Belly confined: Having her umbilical cord not dry out properly is not the only complication of her being on her belly. Her abdominal incision from her shunt surgery is also really irritated because she's laying on it all the time. Suffocation is also a concern when you have a baby that is constantly face down, which is why we have her on a monitor, even here at home. The monitor is hooked up to her by a piece of foam that wraps around her body under her armpits. Beneath each armpit is a lead. One lead monitors her heart rate, and the other one monitors her breathing. If her heart gets too fast or too slow, the monitor goes off; and if she stops breathing or her breathing becomes labored, the monitor goes off. It has gone off a few times when she cries because, naturally, when you get upset and start screaming, your heart rate accelerates. This is a little inconvenient, considering that the monitor goes off because she's upset, but because the monitor is sounding, she gets more upset from the noise. It's a catch 22, but I certainly have more peace of mind when I am able to catch a nap here and there because I know that if anything is going in a bad direction, that monitor is loud enough to wake me.

Sensitivity: Children with spina bifida are often sensitive to many things. We already found out Mira has sensitive skin, so she's probably going to be avoiding a lot of irritant, allergens, and products throughout her lifetime. But spina bifida children are often also sensitive to sound and light. Because of this, I've been paying close attention to how she reacts to noise and lights, but so far I can't tell if she reacting in a normal baby way, or if she is really being caused discomfort. This is another thing that only time will tell.

Cathing: She has to be cathed every four hours because she doesn't have the ability to empty her bladder on her own. While I already breached on the risk of infection her bladder from having to subject it to catheters all the time, there is a reason it's necessary. If her bladder is not emptied when it needs to be, the kidneys (which send urine to the bladder) can get backed up. If Mira's bladder isn't emptied in a timely manner, then the bladder can get too full, causing urine to go back up the tubes that connect to the kidneys, reflux into the kidneys, and cause kidney damage. The last thing she needs is to have actual organ damage! To monitor this, she will get a VCUG regularly, which is a scan of the kidneys to make sure no refluxing had occurred. If no refluxing had happened, her kidneys will look smooth and firm. If she has begun refluxing into her kidneys, they will look wrinkly, which indicates damage.

Syrinx: Syrinx means a collection of spinal fluid along the spinal cord. If we suddenly notice that she seems to be in pain when moving, that she's not moving like she normally moves, or that she's actually losing the ability to move/function, then she might have a build up of spinal fluid along her spinal cord.

All of these symptoms, precautions, and special measures need to be watched/compensated for at all times. I'm going to use my favorite word now: overwhelming. It's overwhelming to think about all of the things that could go wrong. It's overwhelming to think about how it's up to you to notice it. It's overwhelming to think about what could happen if you don't catch it or take care of it. There is so much to look out for, and so much to monitor, and so much to notice. But she's still just a baby! Just like any other baby, she still needs cuddled and fed and loved. Sometimes it seems like she has to be treated like an experiment or project because of how much clinical care she needs and how much monitoring has to be done. But at the end of the day, she's just a baby that cuddles up to my chest, and burps over my shoulder. She's a beautiful little bundle of joy, and I don't want to miss the small things in her life because I was too busy fretting over the possible big things that may or may not happen. So while I will monitor her and make sure to pay attention to any subtle clues that something may be wrong, I'm still going to appreciate the little moments with my baby, because those are the moments that matter most and shape our lives.

Making A Schedule

Sleep is a rare thing in our house right now for Mira and me. With her cathing and feeding schedule overlapping only twice in a 24-hour period, there's not much time for sleeping, or much of anything else, either. Here is our schedule:
6am: Cathing and feeding
9am: Feeding
10am: Cath
12pm: Feeding
2pm: Cath
2:30pm: Give antibiotic, clean her incisions, give her a bath
3pm: Feeding
6pm: Cathing and feeding
9pm: Feeding
10pm: Cath
12am: Feeding
2am: Cath
3am: Feeding
Repeat.
Each part of her schedule takes 10-30 minutes to set up for, and 15-45 minutes to complete.
We also have to check her shunt track regularly to make sure spinal fluid isn't traveling around the tube instead of in the tube.
We have to do physical therapy stretches on her club foot a few times a day to try and stretch her foot in the right direction, and make sure there's no skin damage in the creases where her foot is turned in.
We have to change her diaper on a near constant basis because she can't control her bowels at all, and this has caused some pretty bad diaper rash, so we have to keep her as clean as possible even though she is almost always pooping.
We have to swab her belly button with alcohol much more than normal, because with her being belly confined, her umbilical cord stub doesn't get the chance to dry out like most baby's because it can't get the proper air to it.
We also have to change her butt flap regularly. A butt flap is a little square of plastic, cut from a sandwich bag, that keeps poop away from her back incision. On the top of her little butt crack, we have to keep a strip of stuff called duaderm. Duaderm is a piece of 'adhesive' that melts onto the skin. It can stay on her back for days at a time before you have to remove it with adhesive remover. You use duaderm so you can tape the butt flap onto the duaderm instead of constantly taping and untaping directly on her skin. The butt flap is necessary for keeping poop away from her incision to limit the risk of infection. So last night, I precut a bunch of little butt flaps out of sandwich bags to make it easier and quicker to change.
We also have to clean her catheters. We use syringes to spray soapy water through the caths, and another syringe to spray rinse water through them. We have to use either Joy dish soap or liquid dreft laundry detergent because these are the only soaps that don't build up and leave residue. Residue equals infections when cathing, so using the right kind of soap is important. Then the caths need laid on a surface to dry where they won't gather lint. Lint also equals infection. So thin paper towels are the best. Fluffy dish towels are a bad idea. The caths have to dry completely before being put into an air-tight container because if any water is left in the caths, bacteria will build up in the water. And festering bacteria also equals, you guessed it, infection.
We have to wash our hands vigorously, and use only antibacterial soap that doesn't have added moisturizers and fragrances. Those additives leave build-up on your hands that can transfer onto Mira and her catheters. Again, infection risk.
We've also noticed that she has REALLY sensitive skin. Even though we have to swab her belly button a lot with alcohol right now, as soon as the alcohol touches her, the skin gets bright red. And when we change her duaderm, the adhesive remover contains alcohol, and her skin gets really irritated. We have to wipe it off immediately to try and keep her little skin from getting too irritated. Because of her sensitive skin, we also can't use regular baby wipes because a lot of them contain alcohol and other additives that bother her skin. So instead we use paper towels and water. That's it. Fold the paper towels, put them in a conatainer, and soak them in water.
Since we are still monitoring her food intake, I also have to pump every 2-3 hours in between her schedule and make sure I'm storing the breast milk properly.
With a schedule like this, getting everything down pat and as efficient as possible is crucial, considering Joe works long night hours, and we also have two other children to take care of that are also at demanding stages. Aryanna is about to start walking, and Dustin is about to start school. Speaking of school, I'm currently scheduled for a six month leave from college, which began a couple of months before she was born, so I'm marked to start college back up in June. I really hope to be able to start classes back up by then to keep the overall well-being of our family headed in the right direction.
I kept hearing people say that spina bifida is a group effort, and now I see why. She needs so much, and she is counting on others to provide that for her. She needs a lot of preparation, a lot of attention, a lot of monitoring, and a lot of care. She counts on a schedule just to make sure her organs aren't damaged by her own urine, or to make sure that her skin doesn't get rubbed raw by her own feces. But that same schedule that is crucial to help her body be as healthy as possible is also so off-putting because I have to be disturbing her almost every hour, so she doesn't get to just rest like babies should. It's not fair, but it is necessary. At least for the time being. So while this is a crazy schedule, it's hard, we're exhausted, we're busier in our own home than any job I've ever had, but this is what she needs from me. This is what she depends on. Every sleepless hour, every bump in the road, every busy, frustrating moment is worth it, and I wouldn't have it any other way!

First Night

I'd be lying if I said anything other than "AAAGGGHHHHH!!!!"
It was crazy, and hectic, and wonderful in the type of way that makes you want to pull your hair out even though you wouldn't trade it for the world! That was our first night home with her. Joe and I were trying to unload everything, make sure we kept her schedule, set up everything she needs (which is when we realized or bedroom and her baby furniture is not arranged in a functional way for her needs at all), clean as we went so we weren't making more messes to clean up, oh yeah, and trying to keep our cool.
It felt so high pressure. Like if we didn't get every little detail perfect, the world was gonna come crashing down on us. Overwhelming is a word that I can't use enough to describe many parts of this experience so far. From confirmation on a sonogram, to bringing our spina bifida baby home; overwhelming is the overwhelmingly accurate word to use! She's so beautiful and strong, yet so mangled and fragile at the same time. I constantly feel the pressure of "what if I mess up?" and it scares the life out of me! That feeling had never been so strong until that first night home. In the hospital, you have the security blanket of the nurses and doctors and equipment. At home, it's just you. It's all on you, and that first night home was a night where that was the most forefront thought in my mind.
This little life, which seems so fragile, which has already been through more in her first two weeks of life than most people experience in an entire lifetime, this baby girl facing odds after odds, and struggles and triumphs; and she's counting on me. That first night, while running around my house and trying to get everything right, that thought is enough to knock the wind out of you many times over. But I'm also proud. I'm so proud of her, and I'm proud that God picked Joe and me to give this miracle to.
Joe said he thinks Mira was God's way of saying "get your acts together, there's bigger things in life." I think Joes right. There's no more sleeping in. There's no more procrastinating. Cleanliness is no longer optional. Irresponsibility is no longer optional. Being unorganized is dangerous. And Joe and I needed a wake-up call to that. Well, here she is, 8 lbs. and 4 oz. of a wake-up call that says "You can do better, and now you have to."
So while that first night home was exciting and terrifying and overwhelming, I wouldn't trade the experience for anything.

The Ride Home

Mira is catheterized every four hours, and fed every three. Our ride home is 2-3 hours long depending on traffic and things like that. This gave us a very small window of opportunity to leave the hospital without knowing we would have to stop in cath her or feed her during the ride home. At 6am and 6pm is the only time her cathing and feeding schedule overlap, leaving us a three hour window before her next feeding at 9. When I called Joe, I let him know that we had to be leaving the hospital right after her 6pm cathing and feeding so we could make it home without having to disturb her. That almost worked out as planned...
Mira has no control of her bowels. I know you're probably thinking "what baby does", but it's a little different with her. The nerves controlling her bowels are either non-existent or compromised temporarily or permanently. Only time will tell. But because of this, any time she gets upset, tenses, moves in the right/wrong way, sneezes, hiccups, etc. she poops. Sometimes a little bit, sometimes a lot. So, at about quarter to 6, I set things up to do her cath. This turned into me standing there leaning against the crib for over a half an hour, with my head resting in one palm, while I used my other hand to just hold a wipe over her butt while she pooped over and over again. You can't cath while she's pooping because since she has to be on her belly, the poop runs right over her little pea bug (what we call girl parts in our household). So if you cath while she's pooping, you would get poop in the pea bug, and probably give her an infection. No good. So we have to learn a lot patience when cathing her because with her not having control of her bowels, diaper changes and cathing can often create an entire load of laundry and take ten times longer than you anticipate.
Since cathing took so long, I didn't start feeding her until almost 6:30. So she was still eating until almost 7. Joe and the nurse packed up all my breast milk in bins with ice (4 bins, if you don't mind me bragging a little bit!) while I continued to get Mira ready to go. She has to be on a monitor at home, so I hooked her up to our monitor and unhooked her from all the hospital monitors (yay!). We put her in her car bed (a special car seat for babies that have to be on their belly), and at about 7:20, finally made it down to our car!
We packed up the car, loaded up Mira, I sat with her in the back, and we hit the road! We made pretty good time considering we left almost an hour late. We got home at around 9:30, and Joe immediately started feeding her while I set up her cathing stuff because she was going to be due to cath at 10pm. We cut it close, but luckily she enjoyed the ride, so she was fine with being fed a half an hour late.
We were a little off schedule, and it was weird having her out in the open world after having her confined to an incubator most of her life thus far, but I was thrilled when we pulled into our driveway!

Home!

I haven't had much time to update my blog since we've been home...but, that's the important part; We're actually home!!!!
The night that she gained an ounce was Sunday night/Monday morning. The nurses working the night shift on Mira's case were some of my favorite, so I decided that night would be a good time to sleep and let them take care of her. She was weighed at around 2am, where she finally gained weight. Then 3am was her feeding time, and after that I went to bed until around 9am.
I was sleeping on the couch/bed in Mira's room when my favorite nurse practitioner came in and woke me up. She said "trust me, honey, you want to join us on rounds this morning". I got up and followed her into the hall, where her, a neonatal specialist, and a doctor were rounding with their portable computer stands. I leaned up against the wall and let the nurse read down Mira's chart. When the nurse finished, they each, one at a time, said "sign off on discharge". I was so happy, I started crying! We were sure that we weren't getting out of there for another couple of days, so this was a very big and very welcomed way to start my morning!
Joe had been at work that night, so I knew he was asleep by this point, so I just started calling his cell phone and our house phone over and over again until he answered. I couldn't wait to tell him that we were finally coming home after almost two weeks of neonatal intensive care and two surgeries. We were coming home! After I talked to him, I called Tammy. I was bawling, of course, and holding Mira's hand. It kind of felt like a trick... Like the doctor was going to walk in and say "just kidding, quit packing your bags!" but she didn't, because we were really ready to go home!
When I got to hold her, feed her, and change her diaper for the first time, I remember feeling like she was finally mine, like she didn't belong to the hospital, she actually belongs to me. But this was on a whole other level! There would no longer be a nurse to take over the cathing or feeding in the middle of the night. She would no longer have a specialty team trained for her conditions on standby right near her bed. I would no longer have the resources of a hospital at my disposal at any time. I would no longer be sleeping on a couch to stay by her side. And while all of this is scary and overwhelming, I was sooooo ready to have it be on my shoulders!
I have been researching for months, and training since I arrived at children's hospital for this. I have been waiting for weeks to get to the other side of what seemed like an impossibly high and rugged hill. And this was the moment; the moment where you realize you're on the other side, running happily down hill! It just kept hitting me over and over: Shes mine, and we're going home!