Update on our Peanut :)

Time gets away from me and I have been a terrible blogger lately...that is something I hope to fix in the coming year!

An update on Maelee: Since I last wrote she has had the flu, pneumonia, bronchiolitis, and an ear infection.....gotta love this time of year. She had a 24 hour eeg done to check for seizures...thankfully it was negative. Maelee continues to do the crazy movements in her sleep so we will be taking her to a sleep specialist in January. After the last visit with Maelee's neuro he was very concerned that her reflexes were different in both sides and she was showing her tone differences, so an MRI was ordered.

The MRI was done under general anesthesia and we were a mess waiting the LONG 45 minutes to see her again! We got the best results ever yet the most aggravating results ever....NORMAL! I am so happy that there is nothing major wrong with my sweet baby girl's brain. Her neurologist stated that it may be microscopic and will not show up at this time and a repeat scan will need to be done at a later date (we would rather skip that and just move forward). Having no known cause for Maelee having mild CP is hard but we are coming to terms with it. She is making amazing progress in all her therapies and we are so proud of her.

Over the past few weeks she has been having a few more sensory meltdowns than before so we are adjusting to this and doing our best to prevent, but any sensory parent knows this is a roller coaster you can't prevent you just have to ride out. Her communication is causing frustration. She talks.....we just don't understand. I don't speak Maelee and it breaks my heart. She gets to the point where she is so frustrated it results in a meltdown of head banging and biting....no calming will help. We are in the process of starting to use the iPad to help with communication along with continuing to use sign language.

Maelee is doing great in school! She is starting to socialize better with her peers and is doing great in play therapy! This has been one of the best decisions we made for her. She is learning to be more independent (which is breaking my heart)! My baby is now a toddler! I can't even believe I am writing that.......TODDLER!

We will be continuing her PT once a week! She is doing so good! She started wearing hip helpers to hold her hips and help build her muscle strength up. They help as long as they don't fall down- she has such short legs. :) She will also continue her OT once a week for her fine motor and sensory needs. She just got a new OT as her old one moved. Her new OT seems to really be interested in helping with Maelee and always has suggestions even about the littlest things! Can't wait to keep working with both of them on our little girl! Maelee will be in school two days a week with play therapy and they will also be working on speech with her until we can get her a speech evaluation done for communication.

Reading that I realize she is a busy little girl! When Maelee is not doing therapy she is a typical little girl! She loves her babies and loves to give kisses! We are so blessed by this sweet girl! I can't wait to see what the next year will bring in our lives!

The Month of Thankful Posts

During the month of November everyone writes their daily posts on Facebook of what they are thankful for....I generally participate but this year we have been so busy that it slipped my mind completely so I thought I would write a post instead. But it may not be exactly what you think. I have read the many thankful posts regarding good health, having everything everyone wants, blah blah blah..... but what I am thankful for is much different.

I am thankful for the challenges we have been given. I am thankful for every learning experience we have been able to have over the past 14 months. My husband and I are so blessed to have Maelee in our lives and to be surround by wonderful care providers for her. She has an amazing team of doctors, nurses, and most of all therapists. There are no words to describe how thankful I am for her therapists. Maelee is an amazing little girl and we are thankful. Thankful for each new thing she does, each day she smiles and brings us joy, and most of all each day we find something else out and are able to provide her the assistance she needs in life.

I am thankful for the diagnosis she has, thankful we are able to give her the help she needs, and thankful that we didn't turn a blind eye to our child who may be less than perfect to someone else. I am thankful we are educated adults and continue to educate ourselves in order to help Maelee. We try to educate those around us and in her life.....but we all know that isn't always successful.

This year I am thankful for my family and all that it is! God has given me the PERFECT family and for that I am blessed and THANKFUL! :)

Test of Patience

I wanted to write a post and just couldn't get started....well after a quick visit to Facebook and reading a wonderful poem that was posted I was inspired....

Patience is something that doesn't come easy for anyone, it is not something we are born with and it surely is not something that comes easy day to day. There are times in my life I have wondered if I would ever learn what patience was. I used to sit in the back seat of the car and ask "Are we there yet"....wait I still ask that.

When Maelee was born early and place in the NICU the test was there. We learned to wait and stop questioning. We learned to let God work his magic and heal our baby on his time. And when we brought her home I thought we had this patience thing under control. Well I was so wrong.

Having a baby is hard as any new parent will tell you. It is a huge change in your life, it is the biggest blessing you could ever ask for but it comes with a life altering change you sometimes can't imagine. Maelee however comes with special concerns that require extra patience and extra care.

We have watched and waited without losing our patience as she met her developmental goals either on time or a delayed. We have watched and waited with the diagnosing of her CP and now the evaluating for possible seizures...and still I have patience with that.

But what I think I am losing my patience with is all the sensory things.....My child spent last night banging her head on the headboard....Why? I have no clue! I can't explain it....she doesn't cry....she does it rhythmically and then goes back to sleep. She sometimes bangs her feet the same way, whatever she is in the mood for I guess. Then there are the nights Lee and I have to place our arms on her and hold her down to put her to sleep....most children would cry from this- not Maelee! She stops crying and goes to sleep. I think we are in the need of a weighted blanket at this point. We have had to buy new shoes this past week since she threw one out the door at Wal-Mart....refusing to wear it any longer....those are the days that test my patience. :)

So I will continue to ask for guidance with patience daily and look for answers to help my sweet peanut! And when all else fails I will laugh! :) There is nothing more entertaining than losing a shoe in the Wal-Mart parking lot!

Maelee is a unique child, she is a blessing, a miracle, and has been made with greatness! And for that I have patience.

I am thankful for this life!

It's been a while since I have written.....life has been busy. Maelee turned one! I can't even believe it! She is now 20 lbs and full of such joy! I look back over the past year and realize how far she has come and am amazed every day at how much she has learned and taught herself! I am so proud of her! I can't wait to watch every step of her journey and see what comes next. But with that said here is the post for the day....

This journey is not an easy one. It is not one we asked for but we are so blessed to have been given. I wouldn't change our life, the beautiful daughter we were chosen to raise or the challenges along the way. The past year I have learned that many do not understand the struggles in our life on a daily basis and many do not stick around to find out. We have lost friends along the way, people have stopped caring, and many are annoyed with the conversation of Maelee or may think we are asking for pity. 

Maelee is my daughter. I love her and everything about her. Our life is a bit different than some others and comes with a little bit of a different schedule but we love it, some days it's exhausting and other days I wish we could fast forward to the next....but we were chosen to raise this miracle and we are blessed with just that. I am not sorry if I talk about Maelee too much, I am not sorry if I share her therapy information too much, I am not sorry if I share her achievements too much, and I am not sorry if her doing something which may seem so small to you is such an accomplishment I want to put a billboard up.

I am thankful for the friends we do have. I am thankful for the friends we have met. The amazing group of people I have met online I can't begin to thank. There are so many wonderful people who have come into our lives and have just been there when we needed a place to cry or just say nothing at all. Some days are hard and others are not but the worry doesn't ever change. 

A friend sent me this song a few months back and I am amazed at how fitting it is....please take a moment to listen. :) 

Remember we are given one life and one one chance to live it! Enjoy what you have, the people in it, and love with everything you have! I love my husband and daughter with all my being. Maelee is our world and we will go to the end of our being to give her everything she deserves! :)

I'm Sorry.

"I'm Sorry." Those words ring in my ear like nails on a chalkboard after last week. I keep thinking about them over and over and wondering what was meant by that exact statement. Did she feel sorry for me, pity me, or just have no clue what to say? There had to have been something better to say....or nothing at all would have worked.

When we were in the NICU many people said they were sorry to us. They were sorry we were going through such a hard time, they were sorry our baby was born early, they were sorry we couldn't bring Maelee home, they were just plain sorry. But at the time it didn't really bother me. I had so many emotions that I never stopped to think about it. This past week I was at my doctors appointment giving a family health history and when it came time to give the history of my child......that's when it went all went wrong.

Of course when I said I have a daughter the nurse responded with, "You have one daughter who is under a year so she must be healthy and happy and have no health problems." Ummmm not exactly lady! So I let her know that Maelee has mild CP. And then the words I'm sorry came out of her mouth in a very hush manner with a long pause. Now keep in mind that this was a neurology appointment for me. So when she heard CP I'm sure she was thinking something and I'm sure she was sorry.......but for what I'm not sure.

I'm not sorry for Maelee. I'm not sorry she was born prematurely. I'm not sorry she has CP. I'm not sorry she has sensory regulating problems. I'm not sorry that she is unique in so many ways.

I am however sorry that this lady didn't get to meet my miracle. I'm sorry that she doesn't know the smile I see every day, the laugh that lights up my life, and the sweet babbles that fill my home. I'm sorry she didn't get to see the little girl who loves with all she has and has more life in her than we could ever hope for. I am sorry that that she didn't get to meet the angel who changed my life. I am sorry she doesn't know Maelee.

The words I'm sorry are powerful. They are just as powerful as the words I love you. Maelee is my I love you everyday and for that I am not sorry!

Only some will understand.....

One year ago I was on modified bed rest, swollen, and so thankful that our ultrasound showed Maelee growing! We had just found out that she was growing perfect and had room to grow more which meant there would be no need to take her early....... If only we could have predicted the future.

I have started planning Maelee's birthday celebration. We will be doing something small at home with a few close friends and family. Over the past few days I have found myself feeling more emotional than I thought I would be. The sadness of her turning one is there and that is something I expected but what I really feel is so much more than that. Many will not understand this post and I'm sure the comments of be thankful for what you have.....be happy for how far Maelee has come....etc. will follow. But the way I am feeling is something I am sure is not uncommon to the fellow preemie mother.

I feel sad, anxious, nervous, happy, and excited. When I think of the day Maelee was born I don't think of the happy thoughts many Mother's do. I don't think of the first time I held Maelee, touched her, the first time she breastfed, or even when I kissed her. But instead I think of the fear, heartache, terror, I think of the wait it took to hear her cry, the 2 seconds I saw her tiny face when she could barely breath, how I never got to hold her, never got to touch her, never got to even put my hand on her. I think of how we arrived back in a room with no baby and no clue what would happen.

Maelee's birthday is a celebration of her life. She was born and I am forever thankful for how far she has come. I don't want anyone to think I am not grateful for that. But one day of celebration doesn't do our little girl justice. I instead want to celebrate the day I got to touch my sweet girl, kiss her adorable cheeks, hold her to my chest, feed her, dress her, change her diaper, all the ounces she gained, the way her heart started working well on it's own, and every momentous occasion in the NICU! One day is not enough to celebrate all these wonderful things.

Then there is October 11th! The day Maelee came home! This is a day we will forever celebrate! Then October 16th. Her due date or in our world her adjusted birthday! Every milestone, smile, laugh, PT/OT goal met, every new thing is something we celebrate and we just can't wrap that up in one day or a few hours.

I will throw a party, put on a smile, I may cry not only for my little girl growing up but also for what we didn't have the year before, but I know that we will continue to celebrate for so many days and years to come! Maelee is so special and I am so blessed to be reminded of that daily.  So if you see me crying please be compassionate to our situation and know that I LOVE Maelee more than you will ever know and that the tears come from loss and heartache not from the excitement of such a beautiful human being!

CP video I had to share!

Wonderful video I found that describes CP and spreads great awareness for it! Love this video so much!

Cerebral Palsy will Not Change Maelee

Monday is a day that we were dreading, it was an appointment we did not want to go to, and the words we were hoping to never hear came out of Maelee's neurologist's mouth. "Your daughter has Mild Left Hemiplegic Cerebral Palsy......."

We knew that this outcome may happen, we had done the research, gotten Maelee the best therapy possible, and even enrolled her in school for the fall. But hearing these words made it real. Our daughter has CP and there is nothing we can do to change that fact now. I would be lying if I said I didn't feel guilty, if I didn't think what else could I have done to change this outcome, or maybe we should have gotten help sooner. 

Maelee is starting to show wonderful improvements with therapy and her neurologist believes she has  wonderful outcomes ahead of her. It won't be easy and we have no way to know how this will affect her as she grows and learns, all we can do is help her with everything we have.  Her left arm and leg are weaker and she has hypertonia. Some days are hard, some days are alright. Many people will look at Maelee and think there is nothing wrong with her.  Many will question the diagnosis but if I could take a video of where we started to where we are now it is a world of difference. Therapy is Maelee's treatment for both her CP and sensory concerns. 

There is no cure for CP just treating the symptoms.  She will be continuing therapy and we are looking into getting extra therapy once we find out if she is enrolled in school this fall.  Our counter in the kitchen has turned into a file cabinet and my cell phone is filled with phone numbers....but I truly would not have it any other way. I am blessed to be home with Maelee right now, to be able to be her advocate through it all, and to see her progress each step of the way is life changing.

There has never been a day since Maelee arrived that we haven't been thankful for the blessing in our lives. Her having CP will not change that, a label will not change our girl. Maelee may have CP and she may have some sensory processing problems but she is Maelee and we don't know her any other way. She is our baby girl!  There is no diagnosis or label that will take that away from her- we won't allow it and will fight with everything we have to keep her world happy and filled with love. 

Maelee is our miracle and the center of our world! She is the most loving, kind, adorable, and happy little peanut you will ever meet!

Maelee acting silly in the morning! :)

Amazing Possibilities!

Today we made the decision to fill out the application to enroll Maelee in a preschool/daycare program 1-2 mornings a week starting in the fall! I am so excited for her to have this opportunity and pray they can find a spot for our sweet girl. The place we chose is Special Kare for Special Kids. After taking a tour today I know that I was lead there for all the right reasons.

When I arrived for our tour this morning we were welcomed with open arms and Maelee was all smiles! The day had started out great for us so I figured maybe there would be no sensory concerns while we were there.......or would there?  After meeting some wonderful staff members, the teachers Maelee would have, and seeing all the therapy they have to offer I was convinced we were in the right place. But about 30 minutes into the conversation a teacher got a little to close to Maelee, rubbed her feet, and it was on (screaming, bouncing, and those crazy legs flying....to mention few things)....and then I knew we were in the right place! The teacher didn't give her or I a weird look but instead responded the way I would. She backed away, gave Maelee her space, and continued to speak to me. I felt like Maelee was accepted and that they had no problem with her needing to react this way. They understood what she was dealing with. The lady giving the tour spoke to me about her daughter and how she was in a college and had been dealing with Sensory Processing Disorder her whole life. For that moment I felt less alone, I felt like Maelee would feel less alone in this huge world.

When I told them all we had been through with Maelee they showed true care and compassion. I felt like I had walked into a world where people truly understood and would not judge my child if she bit or banged her head on a bad day, where my child could drag her left leg if she was tired or not use her left hand if she just couldn't that day and wouldn't be looked down on, we walked into a world where children from all walks of life were being loved and educated.


Hopefully they will have a spot for our sweet Maelee! I know she will benefit from it so much!

Where is the Care, Concern, and Compassion?

Care, concern, and compassion....things that are rare to find in genuine form these days. I find that the words "Oh my child was like that" or "So and so did that" are uttered every time someone asks me about Maelee. I am tired of explaining myself. I am tired of Maelee being compared. But most of all I am tired of our concerns, care, and compassion for her and her needs being minimized since EVERYONE seems to think their child is the same.

This may sound harsh and rude. But that is not my intent. I wake every morning and wonder if today will be a good day. Will today be a day where my child is stiff, can she sit good today, will she be able to hold her feet good today....or will today be "one of those days"? I wake each day and say a pray that most parents don't.....I pray for a miracle....a miracle that will heal my daughter and whatever has caused the concerns she is dealing with.

Maelee has made tremendous strides over the past month and I am more pleased than anyone will know. I cry daily when she does things. When she pulls herself up in the middle of the night and calls for me I go running in her room and praise her....even at 1 am! I couldn't be more proud of her. She is learning to work through her muscle tone. It is still there. She will probably always have hypertonia but she has learned to adapt and is a moving machine now.

Her sensory concerns have been a wild ride that we know are just beginning. There are days I start the day with no bruises and end with a million. Maelee loves to jump and kick to calm down...and usually on me! She is learning to tolerate swinging but hates ball pits. There are days she seeks and days she avoids. We just learn to go with it and make the best of the day. I don't stress about it anymore. My main goal it to keep her as happy as I can. But when you ask me about it and then tell me your child did the same thing; it annoys me, hurts me, and makes me feel as if your concern is not real. Maelee is seeing an OT for sensory concerns as well as working on other things. She goes once a week for an hour....did your child do that? Did your child scream and have no way to calm down? (and the list could go on...) If so I am so sorry that no help was offered to you and I would love to recommend some great resources and point you in the right direction.

I know that babies do things as they grow, experience things as they grow, but when a parents concern have been validated by the medical community then please don't question it anymore. We have worked hard enough to have our voice (which is ultimately Maelee's voice) heard and we pray that we are able to continue to get the help she needs! Her therapists are amazing and have helped more than we will ever be able to thank them for! I am a parent to a preemie and with that comes added stress and worry.....stress that many have minimized and now this is being minimized. Not sure if those who always say, "My child did that" are wanting the spotlight....but trust me when I say....IT IS YOUR TURN AND YOU CAN HAVE IT! We are ready for a quiet day, no more doctors, and whatever "normal" is suppose to be!

But our "normal" is this and we have grown accustomed to it. This is our life. Maelee is our world! And we will fight with everything for her. And that is something I am sure you would do for you child as well! :)

Those Feet!!!! :)

Those feet! Look at those feet!

These are the words we have spoken so many times over the past months in sadness and now in the past few days in joy!!!

We were told that Maelee may never stand without assistance, may never walk without assistance, and would probably need much help to get to this point. I have always said that she is a miracle but this past Friday I witnessed one and did nothing but cry.


Maelee has been pulling herself to stand for a while now but without us putting her feet in the correct position or holding them flat she would tumble right over. Her muscle tone has always taken over and she was not able to maintain a standing position. Well she proved us all wrong!

While I was putting laundry away Friday morning I left Maelee in her play area in the hallway. She was banging on the Pampers box and laughing away. I soon heard nothing and knew with our sweet girl that meant she was into something! :) When I got into the hallway she was standing there.....with FLAT FEET! And I didn't put her like that! The smile on her face said it all! I jumped over the gate, prayed she would stay that way until I found a camera, and the tears started flowing. But in my heart I thought that this was probably just a one time occurrence.....it couldn't be real. She couldn't be doing this on her own since everyone said it wouldn't be possible, at least not now. I took a ton of pictures, sent the photos by text to Lee, and celebrated this wonderful occasion!

Well as the morning went on more laundry needed to be done. I left Maelee to play once again in her area with the dogs locked on the other side of the baby gate this time. She usually crawled herself over to the gate and would yell at them through it. This was nothing new and I would expect the yelling. But the yelling I heard was not the same this time. It seemed to be more happy and filled with laughter. I walked into the hallway and didn't see Maelee right away, my heart jumped, and then I saw it.....STANDING at the baby gate! FLAT FEET!!!!!!! So after the 100 pictures I took, the 20 minutes of crying, and the phone calls I made, I just held her and thanked God for this miracle. I didn't know if this would continue. But for this day and this moment we had seen progress. We had seen her therapy working. We had seen all the hard work and the tears she had cried coming into play and showing us what she could do!

We went to her PT appointment later on Friday morning so excited to share the news! Her therapist was so excited she looked like she was going to cry! It is a milestone we didn't expect so soon, didn't expect now, and didn't expect without much more assistance. Her therapist was overjoyed and couldn't wait to see her do it! So over the next hour she watched Maelee be determined and show her all she had learned!

Over the next few days we watched as she pulled up on everything and everyone! She is very determined! Sometimes she falls, sometimes she can't get her feet where they need to be, but she keeps trying! Our little girl is doing things we weren't sure she would ever be able to do! Her muscle tone is still tight, she still has to think about where to put that left leg/foot and it takes time for her to move it, but she is learning to overcome the challenges that have been given to her. She still has difficulty sitting because of the stiffness and her crawling is getting better but the left side is still really stiff and being swung and sometimes drug behind- our sweet little froggy! Her left arm is behind her right and she tries so hard to make it do what she wants.

But none of this mattered this week. She stood with FLAT feet! One milestone that seems so small to many is something that is so BIG to us!!! She is our sweet little peanut and we are so thankful for the miracles she is showing us every day!!!!

Not a Chart, Graph, or Statistic! Maelee is Maelee!

For 9 months we have been filling out developmental assessments, answering developmental questions, and having Maelee compared to charts, graphs, and books.
Well this post is not going to do that. I just answered her 9 month assessment and it was depressing. I know that Maelee goes by her adjusted age of 7 months but they do not give us that assessment to fill out, so unfortunately according to the paper we filled out Maelee is super behind. I am so sick of Maelee being a number on a page, a percentage on a chart, and a bubble on a sheet. Maelee is a human being. She has a heart, is breathing, and a wonderful personality. So today I will write about what they can't put on their graphs, charts, and what won't fall in their percentile categories.

Maelee has blue eyes and reddish brown hair. She has her Mother's eyes and her Daddy's cheeks. Her laugh is contagious. Her smile will light up even the darkest room. She is happy 99% of the time but 1% when she is mad....she is really mad! She is determined, stubborn, focused, and full of life. Maelee loves her routine and doesn't do well when it's changed or broken. She loves her stuffed duck whom we call "Duckington". He makes her laugh, smile, and turn red from all the giggles! She has to sleep in a sleep sack for bed but not one for her nap. Her "lovey" was her blanket in the NICU, a giraffe "lovey" her Daddy bought her on a trip while I was pregnant.....she must have it while in the car! :)
Maelee is the sweetest, most loving, caring, adorable, little girl you will ever meet. Her eyes tell a story the moment you look into them. She loves to bounce and jump. Her jumperoo is also known as her pooperoo......you can guess why! :) When her sensory issue causes her to "meltdown" bouncing is the fix, her yoga ball is her best friend. Bouncing, bouncing, bouncing! With that said she truly loves Tiger! She loves to watch him jump! They have a connection that no one can understand!
Maelee smells sweet and warm. Her hugs are the best and her kisses are so wet you will want more! She knows how to give "loves" and I enjoy taking them from her. She loves her fur brothers- 2 dogs and 1 cat. She loves to pull on them, lay on them, torture them, but most of all just be near them. She could lay on the floor near the dogs for hours. They are her "friends".
When you walk in our home her greetings will melt your heart. She welcomes you with a smile, two tiny teeth (almost 3 now), and usually a giggle or grunt! She loves music and could listen to it for hours. She loves to have "This Little Light of Mine" sung to her....it was the only song that came to my mind in the NICU so I sang it over and over.....and now it is the one that is calming to her! She loves it! She loves bubbles, baths, swimming, and being outside. She doesn't like swinging, red toys (learned this today), peas, and sometimes just too much noise. As long as she isn't over stimulated she is generally happy!
Our daughter is a blessing. She is a miracle. A hero. We are so proud of her and she knows it. We tell her every day what she means to us, how much we love her, and how proud we are of her. Maelee is not a statistic, a chart, a book, or a percentage. Maelee is a beautiful human being. She is a little girl with a few special needs. Maelee is loved beyond measure. Maelee is Maelee! And for that she is PERFECT!

To the Lady in the Check Out Line

Dear Lady in the Check Out Line-

I know you have no idea who I am or who my child is. I know you have no idea where we come from or where we are going. I know you have no idea what has happened in our lives over the past 8 months. Yes, My child is screaming right now. Yes, she is uncontrollably hollering and stiff. Yes, she is upset and there is not a thing I can do but pay and pray it will stop.
I saw your eyes when I fought for 10 minutes to get her out of her stroller because her legs were so stiff and she was so upset. I saw you talking to your friend and can only imagine what you were saying. See I understand that to you it seems as though I have a spoiled child and have no control. Well the no control is correct, but spoiled is wrong. Maelee has sensory integration problems and there is nothing I can do to help. Just 5 minutes before a total stranger came up to her and rubbed her legs...something that should not have happened. It sent her into an out of control fit. You look at my beautiful daughter and see nothing wrong, you look at my child and see a healthy 8 1/2 month old. But you don't understand the special needs she is suffering from.
The unknowns we don't have answers for, the hypertonia that affects her on a daily basis, the overstimulation, the sensory sensitivity that strikes her in a second. To you my child is healthy but to me she is not. Please do not judge me, do not judge my parenting. Please do not look at me like I am a terrible person for letting her cry, or that I am a bad Mom because I can't stop her crying. Maelee came into the world too soon and her little nervous system sometimes just needs to cry it out. FYI it took 30 minutes to calm her down, a nap, and a yoga ball.
I pray you will have compassion and understanding from now on but I know better. You see when people hear my child is in therapy they question me, when they hear she has special needs they do not understand, so I don't expect a stranger to get it. I will just keep doing my best to provide for Maelee in every way I know how. I will keep doing what I have been taught and what my heart tells me is right.
Remember the next time you are standing in line and a child cries....those tears may have a very different meaning than you think. Sometimes the tears we cry are filled with much more meaning than one could ever imagine.

Sincerely,
The Mother who Cried Tears of Hurt After Meeting You

Bouncing Baby! :)

Taking Maelee to physical therapy (PT) can be exhausting but exciting at the same time.  I was so happy that my Dad and Lee were able to join us yesterday for her weekly session. Since Maelee has begun PT I have had to fill in what happens and what is next to Lee....and sometimes I can't remember everything that happens. I know it seems much can't happen in an hour but I promise a lot happens in that tiny span of time.
This week Maelee continues to make strides! She is doing so well. Over the past few weeks she has started "crawling". Let me describe this for anyone who has not seen her....she is not able to put her knees underneath her for any extended amount of time so she looks kinda like a little frog! :) She is doing great and getting places, sometimes a little too quick for me. Emily (her PT) said that we will keep working with her to pull those legs under but this is all related to her hypertonia. She is not able to pull her legs under without her tone kicking in and making her legs go out. Some days she does really good and then there are days when she is really stiff and she just drags her legs around behind her....either way we are so proud of her!
We have decided to hold off on bracing her feet until her muscle strength is stronger. We talked about this with her PT and decided that if we braced now she might become dependent on them.....something I would hate to do prematurely if not needed. Bracing will help hold her feet down and give her good form, but until her strength is better we will hold off.
Emily has begun doing deep pressure massages on her feet and that has helped. Maelee not only has hypertonia but also has a sensory integration concern. We are not sure exactly what this will turn into or not into. She curls her toes a lot and sometimes it is difficult to put shoes, socks, or when you touch her feet she gets very upset. So her standing concern is not only related to hypertonia but a sensory problem. Now the question: Is what is causing the hypertonia causing the sensory problem? or Is the sensory problem making her kick in her muscle tone? We don't know and we are not sure if we will ever know.

With Maelee's sensory concern comes her love for bouncing. I have been explaining this to Lee over the past month...and until yesterday he really did not understand. Maelee has always loved to jump but there is something different about her when you bounce her on an exercise ball. Yesterday she was overstimulated and would not stop crying during therapy (something that does happen every so often) and Emily did exactly what she always does; She got the exercise ball out, sat Maelee on it while she was still crying, and began to bounce her gently. Within seconds she stopped crying, was calm, and peaceful. Her muscle tone decreased and she relaxed. It was amazing!! Lee got to see what I was talking about. She loves the vestibular input this gives her and finds it soothing. Throughout her therapy session anytime she gets upset, extra stiff, or just beside herself- the ball is used and it works great! We bought a ball yesterday......where has this thing been for the past 8 months!!!!
Maelee has her overstimulation moments. Something many will not understand; It's not always filled with crying, sometimes just stiffness, and other times a little of both. Today she was on the verge of THAT moment......I got the ball out and within seconds she was peaceful, relaxed, and at rest. Her muscle tone started to decrease and I was able to move her again. At the beginning of the week she had a bad day, I can say this and know that we tried to make the day better. She was so tight we couldn't get her in the highchair, it took me 20 minutes to get her pajamas on, and then changing her diaper was a whole other challenge. I wonder what would have happened if we had placed her on the ball for 5 minutes during the day.....would her day have been better!? We will never know about that day but we can see what happens from now on.
Maelee will continue her PT once a week on Fridays and OT on Mondays! During OT she will work on her fine motor skills and more sensory focused activities! We are so thankful for the therapists in her life who we know love and adore her! We do not have an answer and that drives us crazy at times......but until then or if ever we will continue to do our best for Maelee! We will love her with everything we have, fight for the best care, and never give up on getting her all she needs! She has always been a fighter and we will do the same for her! She is our miracle! We do love our sweet peanut! :)

EEG results.....Now to Watch, Wait, and See.....

Maelee was seen by the neurologist on April 13th. We were so worried about this appointment but also knew we wouldn't leave with any answers that day. The neurologist had the same concerns regarding her muscle tone as us and wanted to do a follow up appointment after a few months of therapy to see how she was progressing. He threw out some things that it could be...of course making me a nervous wreck even more. I knew that she may be diagnosed with something but I just didn't want to hear it come out of his mouth, not now or ever.
We were scheduled for an EEG on April 23rd. Maelee was set and ready to go. I knew that it was going to be a long day but I never could have imagined how long this day would be. Maelee did not handle being hooked up to the probes well at all- she cried so hard we had to stop and make sure she could breath. It was so sad and broke my heart. I felt terrible. Were we doing something wrong? Should we stop? Is this necessary? Lee reminded me that her doctor wanted to rule out seizures or abnormal brain activity, he wanted to make sure nothing was going on right now, and that something was not right since Maelee can not put her feet down. I knew in my heart we were doing it for the right reason but it didn't change that my heart was breaking over and over. And she just looked so upset.....

But once our sweet peanut was hooked up she was happy as can be!! We fed her a bottle, played with her, rocked her, then put her in the stroller and she slept for the next 45 minutes! The test was over! Now to wait.
We had to wait a week for the results.....a long week!! But it was worth the wait! On Friday, April 27th we got the best phone call, her EEG came back NORMAL!!! Wonderful news! But now we didn't know what to do......or what was next.....

Maelee will continue doing PT once a week. She is making great strides and we can't wait to see her progress even more. Over the next few weeks her therapist will watch her legs and decide when the right time to have her fitted for little braces for her feet/legs to help her improve even more.
Maelee began OT (occupational therapy) on Monday April 30th! We were so excited to be able to begin this part of her journey as well! Maelee has some work to do on her fine motor skills that her neurologist was concerned about. She has never been able to shake a rattle prior to OT- until yesterday! She shook it in the right hand for me and I cried! She still can't do things equally with her left hand, but we understand this and are working to get her on the right path. Maelee also has some sensory sensitivity.  This may sound scary or confusing. But what it means is some noises, certain things that touch her, or too much activity can cause overstimulation or her to have what most would call a "melt down". But for Maelee it's a "melt down" that we can't stop or control. She has been really good with trying new things. I have worked really hard at laying out all types of fabrics for her to touch, making all different noises, and taking her places with different things going on....but I know when enough is enough. I can look at Maelee and see when she is on the verge of too much and am thankful that I know her so well. She has a harder time with touching on her left side or on her legs, but we are trying. OT is working with her on swinging, something most babies find soothing...but Maelee would rather jump! :) She is our little frog!

We know that in a few months we may not have an answer still but we hope and pray that wonderful progress continues to be made. We know that eventually there might be a diagnosis, and we have been made fully aware of what those options will more than likely be. Maelee may have a label for the rest of her life....but that label will not define her. She will define herself. She is a fighter, survivor, miracle, and a true gift from God! :)

Special Club: Invitation only- Receive Invitation from God :)

When we found out we were pregnant I was so excited to join the "parents" group and "mommy club"!!! I was finally going to be a Mommy!!! It was this world that I wanted to be in, like a secret group filled with play groups and conversations that I had only dreamed about. Except when our daughter arrived God gave us a secret special invitation that only 1 in 8 babies receives. We received our invitation into the premature babies parenting group....a group I wasn't sure I wanted to be apart of.......it was not the group we had planned for.

During our NICU stay some days were lonely and hard, sometimes we felt as if we had no one who really understood us or our situation. The days when we came home many had a hard time understanding why we secluded ourselves (during RSV/FLU season we kept Maelee in the house majority of the time), and we knew our situation was different but still felt alone in our choices. When we have to take Maelee to appointment after appointment sometimes the road feels long and narrow with no one to turn to. So many people love us, ask questions, and care....but finding someone who understands or has been there is sometimes all we want/need.

We have been blessed with friends and family who love us and our sweet baby and for that we are grateful! But there will be moments they won't be able to understand and situations they haven't been faced with and in these times God gave us the preemie parents who have come into our lives with open arms, love, and support!

Lee and I met an amazing couple in our pre baby safety class about a month before Maelee was born.....at the end of that class we never thought we would see any one of those couples again, but we had no idea what was planned. Two days after Maelee was born I walked into the NICU and much to our surprise they were there with their sweet baby boy- born too early as well, a very sad situation to be in. I hated to see them there but found so much comfort in seeing their faces each day. I am forever grateful that God put them in our lives and that we continue to stay in contact! Having a preemie Momma to talk with helps keep me sane sometimes! :)

There is an amazing community of preemie parents out there and we are so thankful to have met some and others who we have just spoken with through email! The support they have shown us in all our decisions is unlike anything else. They truly "get it"! No one will understand a preemie parent's choice to stay home for months on end during RSV/FLU season, not to go to a birthday party with lots of kids in the middle of winter or possibly ever, stay home from big gatherings to avoid over stimulation, hand sanitizing like there is no tomorrow, physical therapy, adjusted vs. actual age, how important even the smallest milestone is, appointments, appointments, and more appointments like a preemie parent! :)

I am proud that Maelee is 1 in 8! She is something very special! And we are glad God gave us our invitation!

Do you want to have more babies?

Asking a mother if she plans to have more children is a common question that comes with parenting. This is a question we knew we would be asked and we knew what our answer would be. The problem comes in when people ask in rude, unkind, judgmental, and overall just hurtful ways. Now don't get my wrong we have been asked this by many in a polite fashion but this is my blog and a way to get my feelings out so I am going to address the hurtful things that have been said about this matter.

"You don't want more babies do you? You wouldn't want to do this to another child, would you?"
"I can't imagine you would want to have anymore children after all you put your daughter through."
"You don't know what is going to be wrong with the next one so why would you want another baby?"
"Maybe next time you can do more to prevent this from happening."
......and the list could go on.

I know many will read this and think to themselves that there is no way anyone would say those things. Remember that the next time you are quick to make a statement or a comment....sometimes a little tongue slip can really hurt someone.

When these things were said to me I used to defend myself but I am now ok with the fact that some people allow ignorance to take over and crappy things are said. I did nothing to cause my pregnancy complications. Having a bicornuate uterus was given to me from God when I was born, pre-eclampsia is something my body did without me doing anything, having my water break at 33 weeks was another thing my body did......all these things were under GOD's control and although it wasn't what I wanted at the time I wouldn't trade my situation or my daughter with anyone. She is the blessing through the storm and we are forever grateful she is here with us.

As for more babies. We don't know. Many things will have to be thought about before we even decide to venture down that rode again. As of right now my answer would be no more.....but that may change in 3-5 years. Maelee is a joy and I would love another sweet baby to snuggle on.......

But when I think of pregnancy and birth I don't think the normal happy thoughts. I think of the many doctor appointments I would have since I am high risk, I think of the fear and stress that goes with not knowing what will happen....would I carry to term, would I deliver early, would I deliver even earlier!?!? I find myself thinking about Maelee and how would we manage with a baby in the NICU and a daughter at home!? These are not normal things to worry about but they are the reality we live.

I get sad when thinking I may never have the "normal" pregnancy or birth. I may never carry a baby to term, leave the hospital with my baby when I am discharged, I may never know what breastfeeding is like, I may never know the joy of having a newborn at home, never knowing the lack of sleep from having a baby home instead of not sleeping because your baby is in the hospital. These are all things that I may never have.....but for all those things there are a million more I do have. I have Maelee!

PT, OT, Neurologist....Oh my!

I would be lying if I didn't say I was scared to death for my child. I have been scared most days since she was born. I was scared when she was in the NICU, scared when they let me take her home, scared at every doctor appointment, and I am scared to death for tomorrow.

Tomorrow we will be taking Maelee to a pediatric neurologist. Maelee has high muscle tone (hypertonia) in her legs and left arm, a little on the right arm. She is stiff the majority of the time. Getting her in the car seat can be challenging, giving her a bath is sometimes a very hard task, and trying to change her on a very stiff day is almost impossible.

We noticed the stiffness around 5 1/2-6 months and brought it up at her well visit at the beginning of March. We were told to watch it and let them know if we had any more concerns, well over the month of March it became apparent that Maelee's muscles were stopping her from rolling, sitting, and even putting her feet down (she tries to stand directly on her toes or stands on the outsides of her feet). We brought Maelee back to the pediatricians office and they were now as concerned as we were- she was referred at the end of March to receive physical therapy, occupational therapy, and to see a pediatric neurologist.

Maelee has had 3 sessions of physical therapy and we are so thankful for this! The days she has therapy Maelee is able to move better and it is amazing to see her roll without a struggle. Her therapist is such a wonderful woman who has taken the time to get to know Maelee and who seems to really enjoy her time with her. Maelee is scheduled to have physical therapy once a week for a minimum of 6 months. We are on the list for occupational therapy and are hoping that will begin in the next few weeks.

Going to a neurologist was something we never considered Maelee would need this young. I figured when she was 13 and possibly got migraines like I did she would need to go, but at 7 months. The hardest part of being a Nurse is knowing what signs and symptoms go with certain disorders......its never a good thing when it comes to your child. I know the things hypertonia is associated with, I know the risk factors my child already has, and I know the outcomes can vary. Tomorrow we will be meeting her neurologist, he will probably just evaluate her, maybe schedule a MRI or imaging study, and then schedule a follow up. Many times it's a wait and see thing. They want to wait and see if this is related solely to prematurity or not- I don't want to wait and see anymore.

As her mother I felt guilty when Maelee was born early. I felt guilty when she was hooked up to all those machines, tubes, and wires. And now to think her prematurity has caused something else; something that may just go away or something she may live with forever.

I pray she learns to stand, I pray she learns to put those feet down, I pray she learns to walk and to run, I pray she is always happy no matter what, and most of all I pray that she is forever my Maelee! No matter the outcome I do not want a label or treatment of any kind to determine my little girl or to change who she is. I won't allow it. She is perfect in every way!

Back to the blog!

I started this blog to share Maelee's story and to get my emotions out but then I found myself writing blogs and never posting them in fear I would offend someone. Over the past few months many things have happened in our lives that are so wonderful and some that are scary! I will start with a little update blog and then I will continue this blog with the original intention.....to share our story- the whole story; the good, the bad, the ugly, and the honesty.

So here is a brief update on Maelee- some current topics I will write longer blogs about but this should catch up some stuff! :)

Maelee is 7 months old!!! I can't believe it! She has grown so much! At her 6 month well check she weighed 17 pounds and was 25 inches long! I can't believe she started off life at just over 5 lbs and already hit 17 pounds! :)

In January Maelee went back for a follow up visit with her nephrologist (kidney doctor) to have a blood pressure check and see what the stone/calcification was doing in her right kidney. After an ultrasound showed no more stone- yes I said it- NO STONE!!!! God does work in mysterious ways!!! Her blood pressure was just a little elevated but nothing to be concerned about! We were so excited! We go back in July and if her blood pressure remains down and no new concerns, she will be released from their care! I am amazed everyday at how far she has come!

We have started food and Maelee loves it! She does have some difficulty keeping it in her mouth at times but that may be related to a whole other concern (another post for later on). She eats breakfast and dinner! And will drink water from a sippy cup or at least chew the sippy cup! She loves her highchair my Dad bought her while he was visiting over the holidays! Over the past week we tried puffs- she would not touch them but did chew them a little. Textures and touching are something we are working on (again another post to come later). 

Maelee is a unique little girl and such a joy! She has blessed our lives beyond measure! I am so lucky to be able to be home with her the majority of the time! I started working as a RN in January but only work 6 days a month....so most days are spent with our little peanut! She is our miracle and I don't want to miss a moment!