A sad day :(

Tomorrow is the first day of the new school year. Even though it has been easier as time goes to accept the fact that I had to give up something I honestly love, it still hurts. The other day I went to Kroger and I saw all the cars in the parking lot and I'll admit I shed a few tears. It's hurtful that I was forced to give up something I love. If it were any other job (honestly I think if it were any other school) it wouldn't have been hard. I didn't just work at any old school. I worked with a family. Not having family here is hard and these wonderful woman (and man) took me I and under their wing. I honestly don't think I can say I ever had a bad day at work while I was there. I not only miss the people, but I miss the kiddos too. It's amazing watching these little munchkins grow so much. They steal my heart and I love watching them grow older and move on. I will admit not hearing "Miss Kelly" a million times a day is nice, but I do miss that too. I will say that having Busia, Uncle Larry and Aunt Connie coming to visit Amelia (let's face it, no one comes to see me...right GAV?!?!?) makes it easier to forget about tomorrow. I'm excited to see them all!!

A girl and her monkey!

Isn't she just adorable?!! I have had a few people ask about the obsession with sock monkeys. Well here's the story:

So the Saturday after she was born I was released and went to see her. After about 30 mins we were asked to leave as they were going to try to put in an art line. So Matt and I went to get something to eat and went to the gift shop. Everything we had for her was at home. We wanted her to have something. Well the cutest thing they had was a pink little sock monkey. Walking down the hall I had the monkey. I was walking slow as that's all I could do (just had a c-section 1.5 days before) Matt kept looking at the monkey, then me, the monkey, then me. I finally said "if you want to give it to her go ahead" He basically grabbed the monkey out of my hand and ran to her room lol. 

That Thursday was thanksgiving and Lisa was in. We had planned (before all the horror happened) to go to Cracker Barrel for dinner, so we went. While there Lisa wanted to but Amelia something. Matt found a striped sock monkey that was so cute. Well being the ever so obvious person he put it somewhere that he thought Lisa might see it (instead of saying, here, this is cute, buy this). Lisa bought a Minnie Mouse. Well the next morning Matt was still thinking about that monkey so we had to go back to get it. That's how it all started. 

Every surgery or hospital stay results in a new monk. Now we didn't want monks to mean bad things so she has also got a few "fun" ones. Auntie Earmuffs bought her the giant stripes and U of M monk. She also has a monk lovey and some holiday ones. She really loves her monks, especially the stripes. 

Regression (and teeth)

One thing that really stinks about having surgery is the regression. Watching Amelia grow in areas is amazing and then watching her fall back is devastating. Sometimes the regression is huge (like her big surgery in May) and sometimes it's just a few little things. Even though this past surgery had a few setbacks, those set backs are huge in the scheme of things. When she is already so far behind little setbacks just make it worse. At her therapy evaluation a month and a half ago she was developed consistent to a 1 month old. So when she makes progress it's great. It's not so great when that progress goes out the window. I know regression doesn't go with teeth, but I thought I'd kill two birds with one stone. Amelia went from 2 teeth to 6 with a few more coming down quickly. I guess if she has one thing going for her it is growing normally. Her speech and appetite are good. She loves eating out food and we love sharing with her. It was embarrassing when we were in the hospital and she was on my lap while I ate. She threw a fit because I wasn't putting the food in her mouth too. So just a couple hours after brain surgery she was eating my chicken. Love that girl!

Yes, I am fat

That was awful nice of you to notice that I have put some weight on. It was even more awesome to hear you talking about it behind my back. I guess the tears falling from my face as I look at myself in a mirror or the fact that my clothes are tight and I am completely and utterly disgusted by myself wasn't enough. 

I guess when you are on the outside looking in it is easy to cast judgement on me. "Oh, she doesn't work, why can't she workout" or "She needs to go on a diet, she's nasty" Thank you. I didn't realize that your life was completely perfect that you need to judge me. 

Yes, I should go on a diet, but have you ever left the house at 9 am and come home at 4 pm because you were running to appointments with your daughter who has a multitude of medical conditions? I'm lucky sometimes if I even eat, so the last thing I am worried about is finding time to actually sit and eat a salad. Have you ever had an infant at home who just had brain surgery (and right now is teething)? Have a child who is in pain when it rains or storms, which we've had a lot of lately? That child does not want to be put down. She wants the comfort of her mother. Again, getting to eat is a luxury those days, and I try to find the quickest thing I can. So, yes I should diet and eat better, but until you've spent a week in my shoes, running to and from appointments, trying to deal with everything you've been thrown, please don't judge. 

Yes, I should exercise. Read the above paragraph and tell me when I can do that. The treadmill wakes her up, so when she is napping or sleeping at night isn't an option. I barely get any sleep as it is and I am not trying to go and over do it because society says I am fat and I need to. I need to make sure that I am doing what I can to take care of my baby. If that doesn't please you, sorry. 

I shouldn't even have to justify myself. I shouldn't have to feel even more like crap than I already to do because people like to judge others. Walk a week in my shoes. Just 1 week. Appointments every day (most days there are more than 1). After watching your child have 5 brain surgeries you don't want to see her cry, even for just a few minutes. You see how that makes her heart rate rise and how it causes pressure in her head and the last thing you want to do it see her cry. 

If you are so disgusted by me, please feel free to exit my life. I have enough to worry about without having to worry about people talking negatively behind my back. If my husband doesn't have an issues with me and loves me for who I am, than I am happy. 

Another successful surgery!!!

Surgery was a success! Praise The Lord! He was able to go through the same incision as before to replace the valve. He was able to find a smaller programmable one. It is still larger than the previous one, but it means no furture surgeries to change the setting. He also had to change the catheter again. Normally with hydrocephalus when fluid starts to build up the ventricles are enlarged. With her she has an area (where the bone has been absorbed) to decompress and so her ventricles remain small. So he added extra tubing this time and hopefully that will help with her small ventricles. Everything was still working, just not as effectively as it should have been. 

He did have to make an additional incision under and toward the ear. This was so he could attach the valve to the rest of the tubing. Everything else looks good. 

We should be able to go see her in just a few minutes. As long as she can hold down food and Tylenol can help her pain we will be able to go home tomorrow! 

I'm waiting to hear from her plastic surgeon to see what restrictions she will have since she will not be allowed to wear her helmet for a few weeks. I'm really hoping she doesn't have to sleep back in her car seat. That's not fun for any of us. 

Thanks so much for all the prayers and thoughts. 

Surgery Day

We are here and waiting. I tell ya what, this waiting room is great people watching. Sometimes that's not a good thing, but sometimes it's a great distraction (and not just for Amelia either!). 

It doesn't seem like we've been here an hour, but we have been. We have been taken back to the holding room. She has been checked out and the nurse practitioner (who Amelia loves and she loves Amelia) has been in. In about an hour she will be taken back. The surgery shouldn't take long. He will open her up, test the parts of her shunt and then put in the new valve. As long as everything goes well she should be on her way home tomorrow! That is such a blessing to be able to recover at home. 

Amelia is sitting with daddy (as usual - she doesn't like mommy much, especially when daddy is around). For a child who hasn't had anything to eat in a long, long time, and didn't sleep well she is having a ball.  I love her spirit. I love her ability to laugh and smile all the time. Granted she doesn't understand that her head will be cut open in an hour, but still, she's so happy.  

We are praying hard for healing and comfort for Amelia and for guidance for her doctor. Once she is out of surgery and we can see her I will update. 

How do you prepare?

How do you prepare for surgery? How do you put aside those fears that this may be the last time you tuck your baby in? I'm so thankful that today is Sunday and that I was encouraged and blessed at church today. Knowing that when the trumpets sound I will be with a child that has a perfect body. No more scars and pain. Thats comfort right there. 

It's hard packing a bag knowing that you and your baby will be miserable until you get home. Just when she falls asleep someone comes in to check her or give her meds, waking her up. It's rough, but I know this is what has to be done and it will make her feel better in the long run. 

I managed to do some cleaning (I like to clean and organize when I'm sad or mad). I want to do more but know I need to try to get some rest. Matt is cuddling with a happy little girl. She's up WAY past her bedtime and knows this. The more she does cute things the more daddy eats it up and let's her stay up. I'm not arguing. How can you sleep train a child who is in the hospital every month? Maybe after her 1st birthday we can work on it. Maybe not. At this point, I honestly don't care about that. If I get a few more minutes with my girl then so be it. I can function on little sleep. 

I don't know if it is because this is now life for me or if I just haven't given myself enough down time, but the reality of this surgery hasn't hit yet. It will be like last time, when they took her away is when it hits hard. You are entrusting the life of your child in someone else's hands. Her neurosurgeon has proven himself 3 other times already, so I trust him, but it's not easy. Thankfully this will be a short surgery so by the time anxiety and worry start to hit she should be finished. 

If y'all have had the pleasure of talking to me lately you may notice more attempts at humor. That's my way of coping. I tend to laugh at the most inappropriate times. When I am stressed or nervous I find comfort in humor. One of my favorite movies is What About Bob? I think that movie is so funny and Matt knows something's up when I'm watching it. Things like that get me through times like this. 

If you are reading this could you please say a prayer tonight/this morning. Pray for healing for sweet Amelia. Pray for guidance for Dr Naftel and his team. Pray for comfort for Matt and I. 

Much love,
💜💜💜

Yet another surgery

Off to the OR we will be going. Mother's instincts should never be ignored. Now this particular issue isn't something that requires emergency surgery or anything like that, it is more to help the right side of her head. There is excess CSF, not an alarming amount, but enough to warrant her neurosurgeon to change her valve. If he can find a small enough programmable one then he will put one of those in. Changing the valve will allow for more of the fluid to be drained. The brain is already pushing out on the right side where her bone is gone and we don't want anything else pushing out over there.  

Surgery is set for 12:00 Monday afternoon. It should take about an hour (may be longer if there are issues with any other area of her shunt. She will be in the hospital over night unless there are issues. Amelia will not be allowed to wear her helmet until we see her NS in clinic  3 weeks later. I'm not sure what restrictions she will have from her plastic surgeon but we will find out later. 

When her doctor said she will have to have surgery Monday she looked at him and laughed. He stood there staring at her and I was concerned, thought he saw something wrong. He said "I'm amazed at how well she is doing developmentally."  That sure was nice to hear. Even though she has delays and issues she is doing much, much better than was expected! You go girl!! 

I'm sad that on her 8 month birthday she will be in surgery. I will have to cheat and do her pictures a day early. Shhh don't go around telling people I cheat!! 

I don't know if it is because I knew she would have to have a revision or because bad news doesn't faze me anymore, but I took this news well. I know she is in extremely good hands here at Vanderbilt and in even better hands all the time, God's. 

Amelia had to go through all the pre-surgery stuff even though we've been through it many times before. This includes having blood drawn. Well the first lady was rude and rough with Amelia and messed up the only vein that she had. I told her I wanted someone else to draw, not her. She sent us over to the cancer wing. Talk about beinging me back to reality. With everything we are going through these poor children and parents are going through even bigger trials. Breaks my heart. 

Storms and hydro, and teeth

As I sit here holding my baby, listening to the storm, my heart hurts for her. The type of hydrocephalus Amelia has is where her body doesn't absorb the cerebral spinal fluid (CSF) and so the shunt she has takes it and drains it in her stomach. When there is a storm it causes pressure in her head. She is so miserable. I always felt bad for people with arthritis that could feel in their joints that a storm is coming. Now I'm trying to comfort someone affected by the storm.

On top of her head hurting and her being cranky and miserable she just cut her top two teeth. She also has what looks like 3 teeth coming down quickly. This poor girl 😔 In between all the pain and being a cranky butt, she's been smiling for me, so that's a good thing.

Tomorrow ends our little break from appointments. Her last one was Wednesday, so we got a nice break. Tomorrow she goes for a CT scan at 10 and then we have to wait till 1:45 to see her neurosurgeon. She'll be excited to see him! She really likes him. And I just know that he will be excited to see her as she's his favorite patient!! 😝

If you are reading this, could you please pray for someone close to us who is starting a battle with cancer. She will meet with an oncologist tomorrow to find out what stage and treatment options. Thank you.

It's a blog!!

I tried to write things out when we were initially in the hospital with Amelia.  It was a hectic and emotional time and I tried the best I could. If you read any of those posts you will see that I was a mess. Please don't judge me based on my writing in those posts!! I have made other entries but deleted them because I used them to vent. I know if I kept them someone would read something and get offended and hurt and I don't need that. If I vent it is because I need to get something off my chest. If I haven't already addressed the issue with you personally then it's probably not about you. But nonetheless I deleted them. (This is not to say I won't vent on here ever again!) 

I can't guarantee that I will keep this up, but I am going to try. I will try really hard as Amelia goes through her other surgeries to keep this updated. There may be weeks I don't post anything and there may be days that I post 3 things. 

If you want to know when there is a new entry you can subscribe on the right hand side somewhere. I created this (with a lot of help from youtube videos) but have no idea what I did!! If you want to comment you are free to do that. I am not going to delete any comments unless they directly/indirectly offend another person. That's just rude. 

And just so we know who this blog is about, I will include a favorite picture of a lot of people!! 

Everything in between

Since I started this blog while we were still in the hospital with Amelia and really haven't updated (except to vent, which I deleted those), I will try to give a brief summary of what has happened between Dec 2 and now. 

Amelia had to have a blood transfusion and then after 24 hours we were allowed to go home. Boy was that a scary time for me. The day we got home Matt had to leave 20 mins later to go to school. So there I was with this fragile little girl, all alone. "I got this" is what I kept telling myself. She slept and so I cleaned (I like to clean and organize when I am stressed or upset). I unpacked everything from the hospital, I washed, dried and put away clothes, I dusted and cleaned the bathrooms. I should have rested, but that isn't how I operate. I did fine alone. That next week Matt started working 7 days a week, 10 hour days with a 2 hour commute. I did well then too. 

In the next couple months Amelia was diagnosed with hydrocephalus, cerebral palsy, torticollis, and hip dysplasia. She also has vision problems that are strictly neurological. She had a VP shunt place March 17th and had her cranioplasty (along with a shunt revision) May 1st. That surgery lasted over 7 hours and she was in the hospital a week. She started physical therapy and occupational therapy in June. She goes 2x a week for PT and once a week for OT. She is also in a helmet 23 hours a day. 

We found out that the 7 hour surgery was useless. Her doctor took 3 of her ribs to make up the difference from the frozen bone and it didn't take. Her body is absorbing (well trying to at least) it. Her doctor is certain that the whole thing will be absorbed (or try to and he will have to go in and remove it) but we are praying that just a small area is rejected.  He thinks that in the next 6 months (possibly sooner) she will have to have another surgery. He will put in a temporary artificial plate until she is older and he can take more bone from her rib/hip. 

On Sept 9th she will have to have surgery on her hip. Her orthopedic doctor will go in and scrap out the fat that has built up and push her ball into the socket. She will then be in a spica cast until Oct 14th. Then he will remove it and see if the hip is back in place. If so she will be recasted and the cast will come off Nov 20th, the day before her birthday. If it is not then he will have to go back in and try again. She will then be in a cast till almost Christmas. We are praying everything works the first time. 

She has had so many appointments and has so many coming up. In June she had 3 days where she didn't have any appointments. Some days she had more than one. She decided to skip a few by getting admitted to the hospital. She was in there for 7 days because she had some drainage coming out of the incision on top of her head. She was threatened with surgery, but escaped that, THANK GOD! 

Dec 2

Today Amelia has a MRI scheduled. She is not happy as they stopped her bottles at 4am. Her MRI isn't till 3 pm. How mean can these people be?? She's been spending a lot of time in our arms trying to be comforted. The results of the MRI are important. If things look good (well I should say stable) then neurosurgery will give the okay for her to be released. That is one more step toward going home. 

Matt and I have had some issues with the nurses here on the regular floor. As far as the way things are done and stuff. We Are both completely frustrated by this but after praying about it and Matt putting me in my place :) we aren't going to dwell on that. As much as it bothered us we don't want to go down that slippery slope. I'm so glad I have someone like Matt helping and guiding me. We have really been helpful to each other when the other just needs a little help. How wonderful to have that support. Not only am I married to my best friend, but I'm also married to a Godly man who helps me stay on the right path! 

Amelia did well with the MRI. She had to be put under so she didn't move and did really well with that. Boy was she tired after though. The MRI showed a little bleeding but they weren't sure that it was new or old. Neurosurgery thought it looked consistent to what it should after everything, so they were content with the results. It showed stroke damage consistent to a 60 year old man but they said that because she's so young she could bypass the damage. This is going to be a long journey of appointments and therapy ahead of us but it makes me so happy to think about the future! After my first call from the neurosurgeon I didn't think Amelia had a future. I will take all these appointments! 

 When the neurosurgery team came in they took off her bandages. She didn't like that and I couldn't stand looking at all those stitches in her head. It just broke my heart. Ex washed her head today. Boy was that a chore. Of course she didn't like it but she will hopefully get use to it. We don't go back to see the neurosurgeons until dec 17th to look at the stitches so she has a lot of head cleaning in her future. 

The floor pediatrician wants to see her PVC numbers in the morning as they were getting low. If they are low they will have to do a transfusion. We will see tomorrow morning.