One step closer to the helmet

 It's currently August 8,2025. We are still waiting for Matilda's helmet. Insurance kept denying her, saying she's not severe enough. They were even denying the doctor's appeals. I threw my hands up, and said How much is it? I'll pay for it. There is a company that would pay for it, but I was told it would take a few months. A few months we didn't have. We were in a small window to get it on her before her soft spot closed up. I would have done this all sooner if I knew more. I was also told I could possibly get reimbursed. Another thing I wish I had known sooner. Anyways.

Me, my mother, and Matilda were headed to her appointment for get the proper imaging done for the Doc Band so it can be made. It would take about two weeks for this to be made. That was a relief to hear that, because I thought it was going to take another month. Anyways, we get mostly to her appointment, and I get a call that their machines are down. My mother, and I look at each other. I look back at Matilda. She needs this helmet. The company tells us, it will be up, and running in the morning. We were already so close to her appointment we decided to stay in a hotel vs driving back and forth. Can we afford it? Not totally, but we knew we would make it work. Either way money would be spend. Hotel, or gas. We also were doing some light shopping because it's rare we get to the city..at least for now. My mother, and I decide on a Holiday Inn Express, as long as a room was available. Fortunately one was. I pay for it, and we get settled in. They even had a crib for us to use. This is after a trip to Walmart for some clothes, and something to sleep in. More money we didn't plan on spending....along with the food we ate along the way. We eat, and play with the baby. After she's in bed. my mother, and I are playing a Hunt a Killer game we bought...just to have some small entertainment besides dead scrolling on our phones. I'm a huge reader, but need it quiet to read. My mother, also a big reader, needs noise. So it wasn't going to work right. 

After a while playing the game, we still hadn't solved the case. This was close to 11pm we decided to go to bed. I climb in the bed I'm using and it felt damp. I then smelled something, and it was gross. I call my mom over, and ask her if she also smelled pee, and cow poop. She did. I hopped out of that bed as fast as I could, and ran to the front desk. I told the clerk the incident, and said they could smell it if they needed to. They followed me upstairs, and shoved their entire face into the bed. Gross!!!! The bed was definitely spoiled. We were switched rooms, but I wasn't offered a discount. I still emailed the company to explain the situation. The next morning we were on the way to Matilda's appointment. I get a phone call that the machines are still down, but was offered to go to Dayton. At this point we were a lot closer to there than any other location. So we went. Her appointment was finished, and she did amazing. Afterwards we went shopping. There is a HUGE bookstore there that I had been dying to go to. So we went. I don't think I saw all of it it was so massive. It was a lot to take in. I did notice a lot of empty space, so I hope they're still expanding, maybe making a room for each genre? One thing I noticed, and a lot of bookstores do this, is they made a separate shelf for "popular" authors. (Roberts,Patterson,Steele,etc) I don't read ANY of them, and never will! They're just not for me. It makes finding what I do read very difficult. I like thrillers, and horror, and although there are some very well known authors in those genre's it still can be difficult. Also, with horror lots showcase King, and Koontz. I read King, but I don't think he needs multiple shelves to himself. Showcase more "unknown" horror writers please!!! Anyways, It was cool. I'm sure there are a lot of other bookstores I want to go to, but it's still rare we get to that city. We found some food, and a few other places to try and shop at. My mom didn't want to drive back home, even though we would have made it at a decent hour. We ended up finding a hotel a little out of the city. No crib, but hey, no pee or poop either. So Matilda slept on the floor. She did fine.

The appointment to get the helmet is Tuesday, and that will be a long long appointment. I hope she does well with it being so long. Also, having to adjust to something on her head for 23 hours a day. 

She recently also got to meet her father. We had the hearing for Child Support. I didn't see him at first because I hadn't know he got a different car, but I think things will be good. He was dressed nice, and was polite. He held her a few times. He even seemed to wonder about entering our lives again. I do hope he's telling the truth. After seeing him in person again for the first time in over a year, a wave of emotions came over me. I wasn't mad, or sad. I was actually happy to see him. I do still have lots of feelings for him, and I don't know if it's fully because we have a child together, or what. I do hope he sticks to his word. Our daughter needs both of her parents in her life. I can picture the three of us walking in the park together. I know only time will tell, we both have lots to work on, not just with each other, but to be good parents for our daughter.

Matilda has been so good these past few days. I've managed to get more in the apartment clean, it still needs lots of work, but I also need rest. I will update next as soon as I can after her helmet. I really am nervous on how she's going to take to it. 

Helmets are not just for bikes

 I'm sorry I haven't updated in what feels like forever. I have lots to update on....I'm even behind on updating my pen pals. I'm so sorry everyone. Being a single mom takes lots of time. 

Anyways, where to start? Matilda has started solids, well puree's. I plan on making my own food, but since I can get some from WIC, I'm going to use what is given to us. I so far have noticed she really likes apples. The meats right now are the worst. I opened one jar, and tried feeding it to her, but it smells so incredibly bad. I think meats will wait until she can have something that resembles meat more. The remaining meat jars have gone to the cat. 

    Big news I've been wondering about is, will Matilda need a helmet? Unfortunately, yes. But hey, it's not permanent . Her head is pretty wonky. The helmet wont correct it 100%, but it will make a huge difference in the shape of her head, and position of her ears. 

She is also extremely close to rolling over, and saying her first word. She is my little rockstar. Another big thing this mama is proud of is, she sleeps through the night....most of the time.  It's mostly our cat that wakes mama up. So much, that I can't just be awake. I need to be out of bed for our cat to be happy. Once I'm out of bed, he just lays there, or trips me while I go check on Matilda. Matilda is still most of the time fast asleep. So, I wake her with a "Good morning Matilda." She wakes with a smile. 

She is so so so close to rolling over, and also very close to saying her first word. I hope it's mama. 

I absolutely love watching my little girl laugh, smile, and grow. She is so wonderful. Things are getting somewhat easier as she gets older, but I know there will always be new challenges. I do what I can, when I can, but also try not to over-do it. If a task around the house isn't 100%, I don't make a huge deal, I work on it as I can without overwhelming myself. I always try to still take time to do something for me. whether it be read a book, watch tv, take a bath or shower. Gotta still take care of basic needs after all. 

I'm still working on Matilda's baths, some days she likes them, others she doesn't. I do hope this gets better as she has more, and what not.

Anyway, I just wanted to do an update, as I know more on her helmet situation I will update as I can. I hope I can get some awesomely cute stickers to decorate it with.

Mama

Update

 I know it's only been a few days, but I already have updates on Matilda. At the end of March we went to see the geneticist, to test for Neurofibromatosis. I was told it would take a few weeks for the results to come back. Well, they came back, and unfortunately, Matilda does have NF. It's heartbreaking, but at least I know. I've lived with it, and know it can be difficult at times. I think of all the people who grow up not knowing they have it, then finding out later in life, and not knowing what to do, or all that it can do. I fortunately know more about it, and know what resources that we'll most likely need. I plan on still doing everything I can for my Matilda, in giving her the best chance in this world with all that I can. Nothing will stop us. While I was growing up, I know some things for me went misdiagnosed, or not diagnosed at all, and I'm sure not all resources were given to me. Also, it made me feel weird having to do different things than the other kids. I hope Matilda doesn't feel the same way. I know how hard it is to be different. Kids can be so mean. I don't want that for my Tilly. 

Anyways, I just wanted to give that little update. For those of you on this journey of ours, and are being supportive, I thank you. I'm loving every moment with Matilda, and miss her when we're sleeping. She is a wonderful kid, and I wouldn't trade her for the world. 

Growing,Tests,and Cooing.

 I have lots of updates on Matilda. She is up to at least 9lbs. My little girl is getting so big. She is on a beta blocker due to an elevated heart rate. I'm hoping she isn't on it long. She doesn't like it, but I can't blame her. She has also started to babble some, even mimic me. It's so cute hearing her coo. She is more alert, and is staying awake a lot during the day, and sleeping at night. I'm so happy for that, I hope she continues to sleep at night. It's been so wonderful being able to sleep again. She had a genetic test done, and we're waiting for the results. It's to test for the Neurofibromatosis. Hoping she doesn't have it, but if she does I know we'll manage just fine. 

I'm still working on getting child support, but an appointment is set. It's still sad her father hasn't been involved. He really doesn't know what he's missing. It's all time he cannot get back, and I hope it ends up regretting not being involved. After he left me because of his choices, it did hurt. I had put so much into the relationship, and he didn't give me the same back. But, as crazy as it sounds, I would do it all over again. Because I wouldn't trade Tilly for the world. She is an amazing little girl. I love watching her grow every day. 

I'm looking into a new apartment for me, Tilly, and the cat. The place I'm looking at would be so much better for us. I hope we get it. The outfits I'm finding for Matilda are also so cute. She's been getting lots of compliments on her name, and just her cuteness in general. I'm so glad the weather is also warming up. We'll be able to go for walks, and enjoy the sunshine. 

I'm so glad I have a wonderful child. Motherhood is getting easier with each passing day. Thank you to those who are supporting me on this journey of Motherhood. I loving being Matilda's Mama. I will update when I have more to say, as the updates come in. 

Mommying Matilda

 Hello,

I wanted to start this blog as I journey through this thing called Motherhood. Let me start off with a brief introduction. 

My name is Alexandra, I'm currently 36 as of writing this. I was born at 23 weeks, and weighed 610g. I now have my own daughter. I have a genetic disorder called Neurofibromatosis. I can go into that more later, and may have to if my daughter ends up having it too. I may add more to my story later on if anyone is interested. Feel free to drop any questions for me.

So, probably the main reason you're here...my daughter. Her name is Matilda "Tilly" I gave birth to her January 17th. She came out really small at 4lbs, 10oz. For a first time mom, I'm told I had an easy delivery. I wasn't allowed an epidural...due to the Neurofibromatosis. I have tumors on my spine...again feel free to ask questions. I was told I was in hard labor for about 8 hours. But let me back up some. 

I was induced at 37+2. I knew my OB had put me off work, and I was going to have a scheduled induction. It was supposed to be near where I live, but was told to wait for a call. I got the call the next day around 12. I had people over helping me clean, as I just wasn't able to myself. I was heavily pregnant, and super sore. I get the call, and I'm told to go to a larger city about an hour away. I asked when, she says "now". So we have to drop everything, and leave. I get up to the hospital in the big city. I'm eventually brought to a room, and from what I remember things are explained to me. I was told I'd get an MRI first. They wanted their own test done to see if I could have an epidural since that was the whole reason for me going there. The hospital near me didn't feel it was safe enough. So I'm getting this MRI, and to anyone who has never had one, let me tell you be glad. They are not fun. You have to lay very very still, you are not allowed to move. This may sound crazy, but I try to focus on a random spot on the top of the inner part of the machine. It helps me focus to stay still. The techs said they wish all patients were like me. After the test, I'm waiting in my room. I turn on some true crime, and I believe at this time I'm allowed to eat. I do apologize as part of my memory is fuzzy, and you'll understand why later. I order some food, eat, and wait. I'm told I cannot have an epidural. But if I need a C-Section, I can't eat either. That's why I believe I was told to eat now. I do as I'm told. 

Now this is where things get real fuzzy. I remember there being about a 13 hour gap where nothing happens. I'm waiting, and waiting. By this point i'm hungry again, probably for obvious reasons. I ask for a shower, and something to eat because it had been forever with nothing happening. They say yes, because by the time I may need a C-Section enough time would pass. I shower,eat, and wait. I'm then told they weren't going to induce me until morning. I'm of course pissed because why did they tell me all that just to have to wait again. I think this is when they broke my water. The only thing I fully remember is pacing back and forth with contractions coming. It was so incredibly painful. At some point they move me to a room with a tub. I'm told I cannot give birth in the tub, but I can use it as an aide to help drop the baby further. I try that, then back to pacing. I even try the ball to sit on. I remember being in the bed, and they were going to try the tub again, but told me no, because I was too far dilated. Being told to push, and hold my legs back was difficult, and I don't think the stirrups were up right away in the bed. I was squeezing my moms have. But she kept turning away for whatever reason. She's in a wheelchair, so idk what she was doing. But I remember banging on the bed rails for her hand again. Since the handlebars weren't in the bed I was squeezing her hand due to the pain. I also was squeezing the nurses, but once the handlebars were up on that side I chose the bar. I didn't want to break the nurses hand. I found out later, I almost broke my moms. I was told to push, and push, and push. I remember screaming for the vacuum, or the C-Section because it hurt so much. With not being allowed an epidural what do you expect? 

The nurse or doctor, I'm not sure who kept telling me push, I was as hard as I could but it was so painful. But then at some point they said she was coming out. But...she kept wanting to go back in. I was told she had a head full of hair and they kept playing with it. Maybe to humor me so I would push harder to get the child out. Eventually my daughter popped out. She was placed on my chest. I knew there was more, but at that moment my mind freaked out a bit like "wait, there's another?" no, it was the placenta. Which honestly I think almost hurt more, than the baby itself. I remember them asking me questions due to her weight, and being sent to the NICU. I was sent upstairs where mom, and baby normally go. I know at some point being told I was put on Mag. I think the Mag is the reason I don't remember a whole lot. my memory is so spotty. I was on Mag for at least 24 hours. I could not walk, talk, or do anything right. it was very labored. My mother kept going to the NICU to see the baby while I stayed in my room not being able to even care for myself. At some point, still uneasy from the Mag was told if I wanted to see my daughter. Of course I did. I went to see her, and she is beautiful. She was so so small. I was asked to hold her, and of course I did. I was still scared due to her size, but I held her. 

He father...unfortunately never came to see her. Before you ask, yes he knows about her. He is choosing not to see her. Choosing his friends, and alcohol over his daughter, over me. He was even doing that when we were together, but that's a whole other beast. He just doesn't know what he's missing in her. Sure sleepless nights, but seeing a beautiful tiny human grow, and learn. It's a wonderful thing. 

I know I had to go home for some appointments once I was discharged. It was so hard leaving my little girl. But I was only gone for about a day. I then went back up to the NICU, and fortunately I could stay in the room with her. It was incredibly uncomfortable. After a week alone in the NICU, I went home again, and grandma came up. We had another night in the NICU, then finally got in at the Ronald McDonald House. It was nice to have an actual bed. The main unfortunate thing, besides having to drive to the hospital we were at, as the people at the time that were staying above us were loud. Around 10 at night they were up to what sounded like dancing, and moving furniture. I also couldn't find Discovery ID, and really wanted some true crime. I ended up finding discount Discovery ID. It was a channel called True Crime Network. It was ok, some of the shows I knew, some I didn't. The first night was fine, the second night the channel had sound issues to where the voices didn't match the words. Nothing was synced up. The third night. well, there was no sound at all. I even tested all the other stations, and the sound was totally broken on the True Crime Network. I have no idea what happened. 

Well, we finally got to go home, on Super Bowl Sunday. She had the pediatrician the next day anyways. 

Since we've been home, we've had quite a few doctor visits, and tests. She has some issues we are trying to figure out. It's been difficult for me, but I'm taking it one step at a time, one day at a time. Some nights are sleepless, some nights I fall asleep, and she's crying. I make sure all her needs are met, but sometimes I just haven't been able to soothe her. I'd rather her fall asleep crying, than me risk dropping her while rocking her. 

It's difficult as a single mom. Sure I have some help from some friends, and family, but to me it's just not the same as if my partner was here. Unfortunately I've heard stories of people having their partner, and they're still told to do everything by themselves. I don't understand it. It is not an easy task as it is, and it's even harder to do it alone. 

I will do everything I can for Tilly, I know I'm not perfect, and I'm not trying to, or wont try to. I will do the best that I can, and hope she understands. I hope to keep this blog up, and update on our journey, and adventure into single motherhood. The good, and the bad, and everything in-between. 

Some advice I'll take, some I'll leave. I've already had to tell people who are helping some of their advice I don't like, and I hope they listen when watching my child again. Just because they've raised kids before doesn't mean they know what's best for my child, and what I want for my child. 

I hope to learn so many things along the way, as I enter this stage of Mommying Matilda  

I also have a cat, and I will mention him frequently here. His name is River, he is my first baby. I love cats, always have always will. I love love cats. As I'm trying to compose this first entry over a cup of coffee before the baby wakes up, he's been meowing. He's quite the talker. I guess I could st