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!