Struggles

Lately I've been dealing with a lot of anxiety. I have my good days, but then, more often than not it seems, I slip back into that frame of mind I hate so much. I still struggle with acceptance. I don't want to have to feel this way, but little things here and there remind me that I have no idea what my daughter will face in the future. I think what bothers me most, is the lack of feeling in control. I have this flaw... I need to know I have things under control and I'll drive myself (and others) crazy until I know things are in a specific order. I need to know how things will go, or my mind races until I come to some kind of conclusion about the subject. That's what makes it so hard... we just don't know. Only the future can tell us.

She's doing so well, so really... how can I complain? What more could I ask for? How selfish am I that it's just not enough to put my mind at ease? I should live in the now and just be thrilled that she has no problems. I get so angry at myself when I watch her sleep or watch her play,  because sometimes all I can think is, "What kind of life is she going to have? Can she be self-sufficent? Can she have a family of her own?". Why can't I just look at her and know that she's going to be fine? That's impossible, I suppose, for any parent. All parents worry about their children. It just comes down to we all want what's best for them. Sometimes I just wish I could worry a little less.

I'll never forget the period of time I went through from hearing the news of a possible chromosome abnormality to now. It was by far the hardest thing I've gone through. I felt as though my world was crushed. I spent a good 2 weeks doing nothing but crying and slowly got to a better place from there. I keep meaning to write about that experience, but several reasons I haven't. For one, it's embarrassing. It was the weakest point of my life. Second, I'm not even sure I could find the words to explain the place I was at during that time. I know I needed to go through it to accept this, though. You have to walk through that pain if you want to move on from it.

She's perfect. Far more perfect than I could ask for. I wouldn't change her. She's my strong little girl. I know that regardless, she'll be okay. She's got a wonderful family who loves her wholeheartedly. I need to let go more, and trust God's plan.

She's starting to try and stand a lot, with our help of course. we hold her hands or her waist, and she lifts herself up and giggles. I think it's because she's proud of herself. Mommy is proud of her too. :)

Early Intervention Evaluation

I've been bad about keeping up with blogging lately. There hasn't been a whole lot I've wanted to say, and that's why. Halloween went... somewhat okay! She really did not like trick-or-treating at all, but she looked cute in her costume! I think she'd much prefer being home and snuggled up instead of parading around in a costume in a street filled with people.

She had her ENT appointment recently, and there isn't much news on that. They did see fluid in both her ears, which could be the reason that she didn't pass the hospital hearing test. The doctor said that since she's responding to noises that he's not too concerned about it. There still going to have to do a test where they put her to sleep just for cautionary purposes. That'll take place in December. I'm dreading that.

That's about all there is. She has her 4 month check up this month. Other than that, we're just waiting for Thanksgiving and Christmas! I absolutely love this time of year.

It's a Good Day

I don't have much time during the day, but I couldn't wait to sit down and talk about Madison's Opthamology appointment today. Her eye sight is perfect! He looked at the actual structure of her eye, and there's nothing wrong. He said she's seeing better than he'd expect an infant to at her age. It's SUCH a huge relief to hear that. This is one of the appointments I've been dreading the most. I knew she was seeing -- she follows objects with her eyes all the time, but I wasn't sure how well. She comes back for a check up when she is one. They'll just continue to follow her and make sure her eye sight stays the same. I'm so overjoyed.

She had a home visit from early intervention on the 15th. That went good as well. It was mainly just paperwork to fill out. The actual evaluation is November 9th. The ENT appointment is on the 26th, so that's the next one to get through. I'm nervous about the appointment too, but I know she's hearing and it makes it hard to be TOO nervous. The smallest noises wake her up, and she responds to our voices.

There may be some things to get through later down the road, but it's so comforting to know that as of right now, she's doing perfect. Thank you, God!

Pictures - Maddy Moo, her brother, and cousin went to the duck pond Saturday. :)

Busy Hands

We offically have a little grabber on our hands. A few days ago, Madison started successfully grabbing things. Before this point, she'd try and wrap her hand around things but it'd fall most of the time. Now... if an object is within reach, she has it in her hand and she wants it in her mouth. I love it. For a few weeks now, I'd watch her stare something down and try to figure out how to wrap her little hand around it. Now she does it with no difficulty!

The cold she has had gave her a minor ear infection. The doctor wants to hold off on giving her an antibiotic and see if it clears up on it's own. She didn't really give us an explanation for it; I assumed it was because she knows children with 18q- can be prone to ear infections, and so she doesn't want to give her an anitbiotic unless absolutely necessary in case her body builds up a resistance to it. She has done well, though. She's had a few fussy days, but nothing too bad. We've just been giving her lots of snuggles. She goes back Friday to check and see if it has gotten any better.

We made an appointment with a early intervention program for the 21st. Other than that, that's all there is that's new. Today was her 3 month birthday. Woohoo! She weighs 9 lbs 14 oz. I can't believe it's already been 3 months... wow.

I have a 5 year old!

 Happy Birthday to my wonderful son Kalen! He turned 5 on October 7th. The pictures I added are what were taken at his party today. He had such a blast.

Now that both kids are sleeping soundly, I thought I'd take time to mention how Madison flipped onto her belly from her back all by herself 3 times yesterday! She can hardly wait to get up and get into things. She's trying to figure out how to grab things right now. She'll get her hand around something and try to get whatever it is into her mouth. Sometimes she succeeds, other times it drops and she gets really angry at me. Yes, at me. It's clearly my fault. :)

That's really all I have to say. I mainly just wanted to share pictures. Madison's Opthamology appointment is on the 19th. I'm starting to get nervous about it. I know that she is seeing, just not as clearly as she should. I guess I'm just scared of receiving bad news. What if they say her blurry vision isn't correctable? I have to stop letting myself worry about these things. We can handle whatever will come.

And More Doctor Visits

Madison's constipation landed her in the hospital Monday night. Was it that urgent? Probably not, but I couldn't stand to see her in pain anymore. I tried everything in my power to help her, but nothing worked. She has done her business and is comfortable now, but I'm scared that won't last. Switching her to the higher calorie formula is definitely helping her weight gain, but clogging her up as well. The doctor suggested doing one scoop of the new formula and one scoop of the old formula with each bottle, so we'll see if that helps anyway. Wow... I can't believe I'm blogging about my daughter's constipation. Onto a new subject...

Tuesday afternoon, it became evident that she was developing a nasty cold. Ugh. That's what I get for bringing her to the hospital, right? Her poor nose has been running like a faucet, and she's such a grumpy booger. I've been suctioning out her nose constantly to try and help, but it doesn't seem to do much. She went back to the doctor this morning just to ensure it's nothing more than a cold, and luckily it's not. I know that she could be prone to ear infections do to her condition, so I'm worried about that.

Explanation for picture above: took my babies to the pumpkin patch after her appointment. I say this about 10 times a day, but I absolutely love this time of year. Not to mention tomorrow is Kalen's (my son) birthday! He'll be 5 at 2:59 pm tomorrow. Where does the time go? This party is Saturday, and I'm sure I'll be posting pictures.

Two important doctor appointments for Maddy are this month... ENT, and Opthamology. I'll be blogging their outcome.

Doctor Visits

Today we had to pay a visit to Madison's pediatrician because of constipation. About 2 weeks ago, she had to switch to a higher calorie formula because her weight gain started to slow. I'm pretty sure that is what has caused this problem.

I always hate going to her doctor. I can't shake the feeling that regardless of the reason I'm going, I will be told something is wrong. I dread it so much. I used to love taking Kalen (my son) to the doctor when he was a baby... minus the shots, of course. I got to see how much he weighed, and how much he had grown. I just wish I could share the same feeling when I take Maddy, I guess. I think the fear of it all stems from the difficulties I had during my pregnancy, as well as her diagnoses. Maybe I just worry too much. I'm working on that.

We didn't get any bad news, though! Well... other than it's bad that she's constipated. She has put on 10 ounces since being switched to the new formula, so that's good! She now weighs 9 pounds 13 ounces. They also commented on how active she is for her age. She was kicking and squirming and rolling on her side constantly. They suggested I give her karo syrup, so I put a teaspoon of it in 2 ounces of water. Still nothing. I'm hoping we'll get a result from it soon.

If I could, I'd take it all on myself. She's so miserable. :(

First Installment of "Maddy's Firsts"

The most heartwarming thing happened a few minutes ago. Madison kept turning on her side in an attempt to flip over, so me and Mike decided to give her a little help. When she started to turn over, she laughed. And I don't just mean baby giggles... she LAUGHED. Her excitement took over and she just got overwhelmingly happy that she was actually flipping onto her belly. It was by far the best thing that has hit my ears in a long time. She has been giggling for a while now, but nothing like that. This was pure excitement. She also found it hysterical that she was looking at me upside down. We got a good 5 minutes of solid laughing from our little misses. I wish I could have gotten it on video, but I was afraid if I got up she'd quit being so giddy. Next time, I hope!

Another thing she started doing since yesterday is grab her fingers. She holds both hands out in front of her and tries feeling the fingers on the opposite hand. Doesn't sound like much, but it's adorable to watch. The look on her face is full of wonder when she's exploring new things. It's so sweet to watch.

I'm so excited for Halloween this month. Perhaps my next installment of  "Maddy's Firsts" will be her trick or treating experience. She may not be able to eat the candy, but I'm pretty sure her brother won't mind helping her out. I think I'm more excited than him about this time of year. Bring on the pumpkins. Speaking of pumpkins, they need to start selling pumpkin spice eggnog in stores already!



As The Story Goes...

I've wanted to start a blog for a while, but now that I have two snuggle bunnies instead of one it has been a little difficult finding the time to sit and type out my feelings, as well as recent events. I'll do my best to keep this as updated as possible.

This specific blog is going to mostly be focused around my daughter. Her name is Madison Olivia, and she has special needs. I think that it's important for me to express the frustrations as well as the joys that come along with the experience. I know this will be something nice to look back on; all the small and big things that she has and will accomplish. This is going to be about our Maddy's journey.

The day I found out I was pregnant, I just knew it was a girl. I immediately started dreaming of all the pretty, frilly things I could dress her in. It wasn't long before the complications started coming, and I worried that I would lose her. I started bleeding from about 6-9 weeks. I had a subchorionic hemorrhage, which is when a hematoma forms between the placenta and uterine wall. It can cause the placenta to strip away from the uterus and in return, cause a miscarriage. Every day that passed I prayed that there was still a little heart fluttering away in my belly. She held on, and eventually the bleeding stopped and the subchorionic hemorrhage healed itself. At around 16 weeks, I got a phone call from my OB-GYN stating that the QUAD screening came back positive for a neural tube defect. Lots of prayers and crying happened until I went to a high risk center for a level 2 ultrasound. After determining that she did not have a neural tube defect, they scheduled me for one more ultrasound to be safe. It was at that second ultrasound that they saw she had a two vessel cord. They feared that she wouldn't continue to receive nutrients like she should, so from that point on I was scheduled to go to high risk monthly. Then came my 27 week appointment, and the ultrasound showed that her placenta started aging early.

It seemed like one thing after another kept happening during the whole span of my pregnancy. Filled with constant worry, and struggles with staying strong. I was so worried for my child. I was scared she'd have to be delivered too early and never have a chance to fight outside of me. I just wanted my little girl to have a chance at making it; to keep fighting until she could reach full-term. I worried for nothing, because she made it. At one point, at around 33 weeks, she even stopped gaining weight, but shocked the doctors when in a span of two weeks she put on a full pound. She was born on July 13th at 39 weeks and 1 day by a scheduled c-section; weighing in at 7 pounds and 4 ounces. Her mommy and daddy fell deep in love.

I had a full day with my beautiful daughter, sharing her with family and friends, before the news came that they suspected a chromosome anomaly. Soon after that, they tested her hearing and told me that she wasn't hearing as well as they had hoped. I didn't know how to take that. I cried for 2 weeks straight because I had no idea what the future held for my little perfect baby. I couldn't imagine her having to struggle more than she already had. I wanted nothing more than for her to have a happy, healthy life and that dream was threatened with all the unknowns of this news they were giving me. A month later, the blood test came back. She was diagnosed with distal 18q-. 22.3-23 had been deleted from the longarm of one of her 18th chromosomes.

This condition can cause a number of things: low muscle tone, developmental delays, mental retardation, growth restrictions, heart problems, hearing loss, eyesight problems, etc. That's an overwhelming thing to hear about your newborn child, especially when not many tests had been done to rule out any life threatening problems. Her pediatrician didn't know much about it because of how rare it is, so we got referred to a genetic counselor. I dreaded this appointment. At that point in time, I just wanted to move on. I got the diagnoses, and as far as I was concerned it meant nothing. I still had my perfect little girl and I loved her regardless. She had been a fighter from the beginning, and I knew she'd continue to fight. The last thing I wanted was to confront the problem all over again by hearing all the things that could be wrong. I've got to tell you... I'm so happy I went to that appointment. I came in, and immediately the genetic counselor put us at ease. She assured us that we will have all the help we need, and the only time they will intervene is when it is necessary. She said that right now we have a beautiful little girl, and we need to just enjoy our baby. What a relief it is to hear that; to know that we were now free to do what I wanted to do since the beginning... enjoy her. I was then thankful that we had a diagnoses, and if we needed any intervention, we'd have it.

She turns 3 months on October 13th, and so far she has done incredible. She has been smiling since almost the beginning. She giggles and babbles constantly. She's always giving mommy and daddy a piece of her mind. Her pediatrician didn't believe us when we told her she is trying to talk by making her babble noises. She said it was "too early", but then Madison started talking to her. She acted shocked. I guess she assumed I was imagining it? She's been flipping to her side for the past few weeks; she has even flipped onto her belly a few times! She's got great strength in her legs. She's a little wiggle worm and loves to attempt to climb when we're holding her. She does this cute thing where when we lay her on us belly to belly, we'll put our hands under her feet and she'll bounce up and down trying to get somewhere. If she doesn't like where I sit her (her bouncer seat, car seat, etc) she lifts her butt up in the air and grunts loudly out of dissatisfaction. She's so strong-willed. Her upper body strength isn't as good as her lower body, but we'll be making an appointment with an early intervention program soon and I'm assuming based on their determination we'll be seeing a physical therapist to get her caught up.

We've gone to a specialist about her heart, and it's perfect. She has no problems other than possibly her hearing and her sight. We have appointments for both of those this month. She reacts to even the quietest noises, so I know she's hearing--even the hearing test determined that, it was just a matter of how well. She has a little problem focusing her eyes, but she is seeing.

I know that there are going to be struggles that come along with this condition, but I'm keeping faith that the joys will well outweigh them. After all, I have my little girl. The girl I prayed would fight to be here. I know that regardless, she'll continue to fight. She was meant to be here. Thank you, God. Thank you for my little miracle.

My two little pumpkins.