It Wasn't Supposed To Be Like This

Well it's been awhile and here we are again. As I suspect will happen from time to time I have, unlike my cyborg husband, emotions. This last week they definitely got the better of me. Try as I might I couldn't keep those wet balls in my eyes. I was a snotty, teary mess 60% of this past week. And goody for you! Now you get to hear about it ... er rather read ... whatever you know what I'm saying!

So this week we got to meet another specialist. The Physiatrist. I can't explain technically what he does, but he is essentially a pediatric specialist that focuses on movement (like kinesiology). He is a doctor and sees many kids like Hailey. So the good news ... He said "you know with kids with this condition you wonder will they walk? Won't they walk? -- Record scratch ... pause the quotes for a second ... Jay and I hadn't realized not walking was even on the table as a possibility. Last appointment with neurology was Hailey may grow up to be clumsy ... but she didn't need brain damage for that ... she could've just inherited it from me ... Sir Gimps-alot. So ... that's news. Resume quote ... -- But in her case she will walk. Now whether it's with braces? I don't know? Whether it's with a walker? I don't know. But she will walk." Okay, so trying to be grateful, I'm crying to find out my baby may not walk (remember NOTHING is certain with this damage). He also said that most often kids with this condition fall in the lower end of normal range for IQ. He is extremely confident she will fall in the normal range. Praise God for that too. It saddens me to think that the possibility of her being intellectually superior is much less likely and not probable. That's a weird pill to swallow. But we went to OT today and her therapist said "I'm glad you brought that up," as I was filling her in on our appointment, she said "she is VERY aware of what's going on around her and object permanence ..." Everyone we talk to believes that cognitively Hailey is right there. That is definitely hopeful ... but they all also say that cautiously. It's a "good sign." When I asked the Physiatrist what he meant by she may need a walker - is that a short term thing, for life? What? He said it could be for life ... he doesn't know. Youch. Yes she will walk ... I am grateful ... I am sad that it may only come with the help of a walker for the rest of her life. Again ... this is easy for you ... you just read what I tell you and say oh yay!! Good for her ... For me it's my life. My baby. Permanence. I'm happy ... but crying at the same time. Her hamstrings appear to be a little short ... which can happen with "normal babies" so it's not "telling" but he put in an order for leg braces for her too. We don't have them yet, but Hailey now needs 2 wrist/hand braces, 2 leg braces, KT tape, and another wrap for her arm that I can't think of the name of right now - but it helps to "Supinate her arm and hand." (Supinate means to turn it from palm down to palm up.) All for one baby that doesn't even weight 17 pounds yet.

PT was hard last week as her therapist was sketchy on the doctor's opinion of walking. Talk about making your heart sink. She never contradicted him and after a few moments directed her energy into saying "well ... I just get nervous when doctors put a time frame on walking." Which I never said he did. I suspect this change of direction came after wetness appeared in my eyes to help me feel better. Long story short ... I'm now more confused than ever because I keep getting told one thing only to be told another by someone else. CP (which she hasn't officially be diagnosed with, but everyone is treating her as such) is supposed to be "stagnate," which means it won't get any worse ... come to find out that when kids like Hailey try to walk the tone in their legs INCREASES (which means gets worse) and causes walking to be much harder. Which is part of the reason some kids don't walk. UGH!!!

Honestly that is one of the hardest parts about this process ... what is going on ... can anyone say anything with certainty?? NO. The answer is no. If I have questions I pretty much can't answers and if I do they aren't straightforward and are confusing. I am not an intellectually superior person. Yeah go ahead and yell at me like you all do each week that I'm too hard on myself ... that's fine. The grades my entire life would beg to differ with you. I'm not hard on myself when it's the truth. I've only ever been mediocre scholastically which is why I cry for Hailey because I don't want that struggle for her. But one of my biggest pet peeves is being confused. I hate it. So much. And this process is one big confusion after another. One doctor says this, another specialist says that and everyone says lets wait n see. Well ask my husband I'm equal parts impatient and stubborn. I want my answer and I want it now. I don't want to wait 6 months or a year or 2 years.

Now for the good stuff. Still being blessed ... You guys! How can I Thank everyone enough? I'm baffled and stunned and humbled and grateful. Every time I think we are heading into loneliness ally someone comes around and does something that proves 2 things; 1. That God is keeping His promise and 2. I know the best people in the world. Weather it's not 1 but 2 random acts of kindness in Target or a well timed text or the best card I've gotten in a few weeks. I'm not alone. I said it earlier and I get to say it again. There are 2 things I've never felt this whole time; unloved or alone. You won't let me. And for that ... that is pry the greatest gift of all. Because ... this wasn't how it was supposed to be.

First of all ... I was supposed to have all boys. I know boys, they're easy and I can do boys. I had all girls. What do you do with a girl?? Second, I was supposed to only have 1 baby this last pregnancy. As most of you know when I was pregnant I went in for my 9 week standard OB appointment and congratulatory doctor visit. The in office ultrasound did it's job and showed 1 lil bean in there. Flash forward to my 18 week gender scan ultrasound and bada-bing TWINS. IDENTICAL GIRL TWINS. Proud of  Jay for not passing out or throwing up and my beautiful sister-in-law for "calling it" when I was only 10 weeks. Yes I'm not joking she told me it could be twins ... but I guess a fellow mother of identical twin girls would know!! Holy moly ... well okay that's great! But I was supposed to deliver full term naturally and my girls were taken at 35 weeks via emergency c-section. I was supposed to exclusively breast feed and me being stupid I unknowingly ruined my milk supply and have had to supplement with formula. Everything I had planned has completely gone out the window. Everything. Which only proves to the old adage "If you want to make God laugh tell Him your plans!" Oh boy ... in my case I had God in stitches!! But my pride and my feelings have been wrecked. Despite what you think you also told me I'm entitled to my feelings and I have felt like a massive failure these past 12 months. Just because you think I'm doing a "good job" doesn't necessarily make it so. I'm keeping them alive but that's about it. I'm struggling. Greatly. And I'm doing my best ... but my best doesn't feel good enough. I feel like a failure that Hailey even HAS PVL (My kids were supposed to be normal and healthy you know), I feel guilty we had to buy expensive formula (I hate it, it's disgusting and I'm ashamed I had to give it to them), I feel like crap that my house is filthy, Emma is neglected and I forget everything. Tell me what you want, but you can't take my feelings. And I feel like a failure. Because it wasn't supposed to be like this.

At the end of the day, the very very long days, I look back and say we made it. Each day we make it. And I hope that some day my girls will tell me it was okay. That they knew I loved them. That even when I take my stress out on them (unintentionally) or don't have much time to just sit with them that they know I would give my life for them. That I would give every part of myself for them. I hope they know that I love them more than anything.

Hailey had her best day of therapy ever today. Only one huge tantrum then after that it was good steps and hard work. I've been excited to see her improve, even if it isn't as fast as apparently she is supposed to be improving. I'm thankful her therapist is human and talks to me like a hurt mom. That she thinks about what I say to her AFTER our sessions (Emma told me last week that she loves Hannah better ...) that she came up with ways for Emma to play with Hailey to help her be more involved. I'm thankful that more likely than not Hailey will walk in her life. I'm thankful for friends who haven't forgotten me and people willing to go out of their way to help. I'm thankful for a loving husband who has been more than supportive. Who is willing to do whatever it takes to help our Hailey girl without blinking an eye. Who is willing to sacrifice what he wants for what is best. For helping me when he can and for telling me he understands I'm doing my best. Even when I ruin a totally easy recipe. I'm thankful for prayers and a God who loves me despite my never ending faults. He is good.

Thanks for reading, thanks for helping, thanks for caring. It means the world. And I can't wait to tell Hailey when she's older, just how many people love her.

Bits n Pieces

We are on week 3 of therapy (Due to her OT being out and my stupidity we had to therapy last week) It's going well. Her therapist said she's doing well. It's hard. I can tell it's hard for her which then makes it hard for me. I hate hearing the therapist say that things are so hard for her that are not hard things. I hate hearing a professional tell me we need to get her moving because so much cognitive development is in movement. (Not starting an argument about who what where why how ... just stating a feeling.) I hate FEELING like I failed her because of how far behind she is. Like I should have known and been doing more to help her. (No, no one has said that to me ... again it's just how I feel) Some hard feelings for me lately. Did the hard thing and celebrated when she did a small thing. Like putting her hand down to keep herself from falling over. That, my friends, is a natural human instinct, but Hailey doesn't have it. She has to learn it. So, when she did it today, we had to celebrate. I hate that. Pry will for awhile. But I am doing it. I hate the fact that she is so slouched forward and it sounds and seems like my fault that I wasn't positioning her correctly all this time. I am so frustrated. I hate this.

I got a call the other week from the pediatrician's office to let me know they put in an order for us to see the Physiatrist. That's the word. One of my friends got it lol. Called to schedule ... January 11. Guess they're busy. But this appointment will address Hailey's spasticity or stiffness in her body. It manifests itself in different ways. I talked about it in my last blog post if you need to read more, but basically she has to concentrate so hard to do one thing that the rest of her body gets completely stiff. This can be bad as I learned yesterday because as Hailey is growing if her muscles don't stretch they won't grow. Her bones will and the muscles won't follow and could leave her hand and arm permanently limited. That. Scares. Me. I was able to hold it together in PT yesterday, but I was definitely crying on the inside. As a mom you kinda feel like you should know this. Like I should have been stretching her this whole time. Which if I'm totally honest I did try. Not how they are teaching me, but I did other things. I guess I will keep my fingers crossed I'm doing enough and it's not too late.

Another frustrating venture I'm on is Help Me Grow. I can't begin to tell you how many people have told me to contact them. Including the coordinator who met with me in the step down unit at the hospital not long after the dinks were born. (I call the twins Twinkidinks, Dinks for short) So I already knew of them and just honestly I haven't wanted to call. I had to ask specifically "help me with what? How are they a resource?" Because I couldn't understand what they were going to do for me. Well, broke down and called. If for nothing else, I hope they can help me navigate requesting funds and filling out paper work I can't find and won't pretend to understand. Hailey has a clinical diagnosis ... and yet ... they have to come out and do their OWN assessment to determine if Hailey needs help. What? Is that not the biggest waste of everyone's time and resources?? She has been diagnosed. By a doctor. A specialist. That bears no weight?? Nope. Well I was told I'd get a call back same day ... it's been around a week and nothing. Ugh ... no wonder our neurologist said they were stretched thin and may not be able to help. I had to call my original person back today (that is amazing in and of itself that I remembered) and say yeah I never got called.  So hoping this works out and turns out they are as wonderful as 500 people have told me they are. So far ... me 1 HMG 0.

The other place I struggle with is my Emma. She is so bright and funny and has so much energy. Honestly, I can't even start to tell you how much stuff I need to do in a day and trying to balance it all is awful. Emma does not get the time or attention she deserves from me. Nor the patience. I struggle every day trying to remind myself to give her time and to enjoy it. It shouldn't just be obligatory but wanted. That's hard when my house is a disaster (yes still) and my time is so limited. That and the fact that I'm averaging 3-4 hours a sleep at night.

Now for the good. Hailey is doing well. I think. I continue to see improvements. As everyone stated and I already knew, we have some days that are better than others. Sometimes she sits and plays so well, it's hard to tell. Other times she throws herself back in a fit and screams. But overall ... we're getting there. Her OT even noticed that she is already eating better! (She had to learn how to chew) She basically was showing off at OT yesterday for a new therapist that was there. I don't think the new woman believed Breann (Hailey's OT) or I that the things we said were problems were actual problems because Hailey did everything like a BOSS. But again ... still so much that needs addressed.

I turn 31 tomorrow. HAHA I'm old ... and I'm not just saying in years. I have the soul of a 98 year old. Kids today are crazy with their sayings and clothes ... I don't even know what's goin on just as long as you stay off the lawn!!! But seriously, some of my friends got together and bought me dinner at Cheesecake Factory on Monday. That's not cheap guys. I was under the impression I was going out WITH friends, not that they were taking ME out. They even bought me a drink AND Dessert!!! WHAAAAAT?! Okay then to make my ticker stop they got me GIFTS ... STOP IT! Just STOP it! AND ... cherry on top ... they went around the table and gave me words of encouragement and kindness. Things I don't fully believe to be true about myself, but they do. I cried. I cried because I've never had that before. I cried because I haven't really ever "celebrated" my Birthday since I turned 21. I've never had a dessert plate that says Happy Birthday on it with chocolate drizzle. And I have never seen such ridiculous generosity for someone like me. Whether or not you think I'm deserving is besides the point. I don't feel it and that makes me so much more in awe and grateful. From the bottom of my heart and the depths of my soul I will never forget that night and I will forever be grateful. (Did I mention my friend who put it together made me a BLOCK O CAKE?!?!?!?!?!!!!!! She MADE ME an Ohio State CAKE! #ItsNeverGettingEaten) Plus I have already gotten gifts in the mail ... I'm just ... sigh ... so overwhelmed. In the best possible way but honestly ... God loves me too much. I begged Him not to leave me, but he's pouring down blessings like Noah's comin. I expect it is to help prepare me for the dark times that lie ahead. For me to keep these things in my heart to recall when things are bad.

Thank you Lord for loving me as only You can love. Beyond words. beyond measure and certainly beyond worth. I do not deserve You or Your gifts Lord ... but that does not mean I am not forever grateful. Your mercy and grace surround me Lord and fill my heart to overflowing. I cry tears of joy and thanksgiving lately. Thank you God for keeping Your promise to never leave me. To hold me and comfort me in times of sadness. For being bigger than anything I face here. For being my firm foundation. For being the prodigal father waiting patiently with arms wide whenever I need to come running back. For loving me the same whether I mess up or do well. For being all things I need at all times. Thank you for putting people in my life who are greater than I. The smartest and greatest people in history always surrounded themselves with people smarter and better to help better themselves. You are only as good as those who surround you. And I must be pretty dang good. Amen. 

Updates are Fun

So I told you I'd try to space things out so that you don't get bogged down with blogs ... LOL. So now that I have had time to gather information, here it is ...

First of all ... I put this in God's hands months ago before the doctors, tests and diagnosis'. I've know in my heart Hailey was special needs since she was 3 months. And I cried and prayed and told her I loved her. I begged God to keep His promise to me and never leave me. BEGGED. And I think this last week was His firm slap to the face reminder I need that He is here. He is all around me just like I asked and He promised.

First of all ... every time I turn on the radio (95.5 The Fish here in Cleveland) I have heard a myriad of songs (of course none of which I can remember right now) that I have praised with for so long but now take on a whole new meaning. Songs that remind me that with God, "Nothing is impossible." And for me, that is HUGE. I know I was a debbie downer in some of my posts, but I was just trying to steal my heart. I couldn't get hurt any more and if I was blank, I couldn't be hurt. BUT ... That being said ... we had a week of ... well ... joy.

First things first. We had another appointment with Neurology last Monday. It wasn't with our original doctor ... (Insert supreme frustration that has nothing to do with anything relevant ... just really irritated about that) ... but I still liked him. He was able to give me information I could understand and re-instill some hope. It was a long appointment ... so I'm gonna give you the cliffs notes. Basically what he said was "and MRI is just a picture. It just shows us that there is something there. It doesn't tell us anything." Huh ... okay, I'm with you, continue doctor. "What we really look at is head circumference." Which makes sense given the fact that they have measured Hai's head about 8 times. He then had the resident pull up her charts and her head circumference is around or above average size for her age range. Okay what does that have to do with anything? I'll tell you! Stop getting ahead of me ... Sheesh! So he said "the brain grows, it keeps growing no matter what else is going on." Then he inferred that if it isn't, that's what they look for and there are or could be additional problems. Hailey's head is growing, which means her brain is growing. Which is good. So good. Her soft spot is still open which means there is still room for more growth. Good news. Great news. He then compared her head chart to her weight chart (which both she and Hannah are barely on the curve for weight) and said "See ... look where she is for weight and where her head is." Let me tell you since you can't see ... BIG difference. He went on to say that the we are born with too many neurons in our brains. All of us. And at a certain point, the brain says, I'm going to cut what I don't need. So our natural brain function is to prune what it doesn't need or isn't using. So in Hailey's case, we don't need to panic because her brain should (and most likely will) compensate for the damage. Other parts of her brain will take over to do what the damaged part can't. A friend of mine shared her birth story with me (which I had no idea) and told me the same thing. She had some damage but the other parts of her brain compensated and she is a totally functioning adult and mother!! Great testimony for me. Because I had no idea. The Neuro also said that this is just the short term. He said look at when we're babies, we can basically do nothing right? Then when we turn 2, look at all the things we can do! We are basically tiny humans at that point. Okay now don't get argumenty with me. Hear what he is trying to say, not that babies aren't humans, but a 2 year old can do essentially everything and a baby can't. His point, there is so much time for things to happen. When she turns 2 we will look at things and see then. For those who don't know, Hailey is 10 months, so that is a little over a year. This information gave me breath again that I can narrow my focus from what am I going to do when she's 7, to, okay let's get her stronger and go from there. We will have re-evaluations every 3 months to see where she is.

Now, I know what you're thinking ... Christie we've all been telling you one step at a time this whole time!! Why didn't you listen? And well ... the only thing I can say is I heard you ... but the brain and heart are two very separate things. My brain knew that ... but my heart couldn't get over the extreme possibility this would be our life. So now's where I say, you were right. There. Feel better? Good.

At the end of the day, he told us the best news we could have hoped for. Nothing. NOTHING is certain or guaranteed with the brain, so things can change, BUT ... at this point, chances are slim that this will affect her cognitive process. Which is what I have so needed to hear. Based on the fact that Hailey is present in situations, she's reactive, talkative, engaging, plays etc. That looks promising. Also based on what I said above, it will most likely not affect her long term. There is a real possibility she could need devises to help her walk or that she may be clumsy as she gets older ... but really ... she would probably get that from her mother anyway ... so the odds are forever NOT in her favor there ... Sorry Hai Hai!! Least you got your daddy's eyes ... She does stand a chance of being able to catch up. And this I will cling to.

Which brings me to Therapy. Whew. Had our second OT appointment today where we went over her assessment. Hailey is not bad. Her words, not mine. She is in the 16% percentile for dexterity for babies her age. Which apparently isn't the worst. So okay. But we do have a lot to do. She is already markedly sitting up better and using her right hand more. Phew!! What I've been doing for the last 3 months didn't hurt her! HA! We started using Kinesio tape today to help with her hand which I am super excited about. I LOVE that there are different "out there" options being utilized to help her. I am an ALL IN mom. If it helps, lets do it. Or heck, lets try it! We also are working on stretching her arm and hand out. The OT's goals for her are to get her weigh bearing on her arms (mostly right), take a closer look at her eating, get the right hand more utilized and a few other things. She also advised me to see a Physio ... hmmmm ... what's he called? Huh. Yeah. Got nothin. I even tried googling it ... came up empty. And don't say Physiologist because that is NOT it. It is something I've never heard of before. But he is a doctor that will look at how Hailey moves and make some recommendations on what she may or may not need. (i.e. chiropractor is not helping, she needs meds for her spasticity)  Yeah you read that right ... hardest part about today was talking about Hailey's spasticity. That means her stiffness. *Cue mommy tears* It's much harder for Hailey to do what other babies can. So much harder to sit, reach, play etc. So in order for her to concentrate on what she wants, other limbs become rigid and stiff. Like if you were to focus all your energy on staying sitting, your legs would be stiff and your arms just to focus your strength and energy on your core to keep you stable. That is my Hailey's struggle right now. Whooooo ... tearin up here. This is the hardest part of this journey, celebrating things that shouldn't need to be celebrated. Watching and hearing her cry because she is so spastic and trying but can't sit or move the way she wants. But I digress ... kinda. Her OT and PT discussed last week that her stiffness is pretty bad. And that she may need medication for it. Small heartbreak. I don't want her on medication. But if it helps, it must be done. So that is some news that I will have to carry, consider and prepare for. And yet ... another appointment. Even though you know it's coming ... it's still hard anyway. But all things considered, she did well today. I'm looking forward to PT Thursday.

On the other side of my world ... people have been beyond generous. I have been completely and totally enveloped in a world of generosity I have never known before. Let me tell you ... I really am not worthy of this level of love and giving. I have not been kind to many, I am not thoughtful, I fail my friends, I forget to call my grandmothers, I don't give like I should, I forget to volunteer ... I am a hot mess of failure. And yet there is love. So so so much love. Which have turned my tears from sadness to good heart break. My heart is broken with so much goodness. Gift cards, thoughtful gifts, cards, texts, posts, e-mails, the hugs (virtual and real), MEALS ... HOLY MEALS!, the babysitting ... I just ... what am I supposed to say to that? Thank You? That's just pompous and rude at this point! I have no words to offer that adequately reflect how I feel. Which is seriously no small task (ask my husband). I have words for everything. Even made up words. I am AWESOME at making up words. But with this level of generosity, I can't. There is nothing but tears and THE MOST heartfelt THANK YOU. I hope someday it will be almost enough. I can't wait to date my husband again. It's been a few months. Thank You for helping make that possible for us again.

So here's to another week survived. A week where I was so overwhelmed by generosity and love that I wasn't sad. There is still so much work to be done ... but we're 1 week in and we're still here.

If you want it ... you go get it Hailey cakes! ... I love you more than you will ever even be able to fathom. And I will never leave you.