One more sleep!

I can't tell you how excited I am for tomorrow! I am more excited about tomorrow than I am Friday. Tomorrow Amelia FINALLY gets her cast off!! Woot woot. I don't know what I'm more excited for, quicker/easier diaper changes, no more stinky cast (she had the stomach bug, teething and runs from meds all after getting this cast), actual baths or the fact that I can see if she will be mobile or not. I will probably get to the doctors office an hour early because I'm so excited!

It has been a long few months but she has been a champ. She hasn't been bothered by the cast (besides getting upset that she can't sit up or crawl on occasion). She has been crawling in a circle, so she still get to various toys. She also tried to get her left foot today lol it was so cute! 

I know she is going to be excited about not having it and more excited about taking a bath! Once she can get to sitting up on her own she will really love bath time. 

What a week

Tuesday of this week started with Amelia's second hip surgery and recast. We got to the hospital bright and early and were home before lunch. Everything went really well. Her hip is exactly how it should be and her cast will be coming off Nov 20!!! 

Wednesday night I noticed a new discharge on the incision site is Amelia's shunt. Thursday morning I called the NS office and they sent us to the ER. A shunt series (x-Rays) and CT scan were needed. Despite throwing a fit we got the shunt series. The CT is another story. After 3 tries (one normal, one after feeding and one when she was sleeping) and her screaming we decided to sedate her. Well apparently the IV wasn't placed correctly because the medication didn't work right away. After 2 doses and lots of tears we finally got the scan and headed to our room. Amelia was having emergency brain surgery in the morning. 

When we got in the room she had a shunt tap done. This is where a needle is stuck in her head to draw CSF to make sure it's not infected. This little girl spazzed during a CT but was talking and calm during the tap. Those drugs finally kicked in. 

With the leaking it was just a matter of time before the shunt and brain became infected. So Dr Naftel wanted to remove the shunt on the left and get it put in on the right. 

Thankfully there was no infection in the CSF. To be sure another sample was taken during the surgery and sent to be tested. The shunt on the left was removed and another one placed on the right. Dr Naftel was completely happy with the outcome. He said it made a huge different and don't be surprised if her head was sunken in eventually. By the time we got to see her head was already sunken in. What a difference putting the shunt on the right side made. 

We had some issues with her staying awake and eating and I was not sure if she was just getting used to the new pressure or if maybe there was over draining. When the NS team came through they felt confident that it was okay and she's come around. An hour later we had dinner and that's all it took. Little princess perked up and ate like a champ. I guess a bottle wasn't going to do for her. 

If all continues well through the night she will get to go home tomorrow. I feel so bad because my little baby is bald but she will have hair yet again. What sucks is that I have to now see all her scars, I can clearly see the bone and where it ends and I'm reminded of all she's been through. But this too will pass. 

Always something :(

I don't know why I expect anything to be uneventful and to go our way. I always end in disappointment and hurt. 

Last week monday I called the neurosurgeons office because Amelia's eyes weren't sitting right with me. He right eye was crossing more, her head was getting larger. I called and of course because she doesn't throw up I was ignored. Finally got a call Wednesday to come in tomorrow for a mri and see her NS. Well in my world that meant Thursday. 3 times in the voicemail she says tomorrow. Well after she called me a liar when I showed up Thursday, I find out her tomorrow was next Tuesday. 

So this morning after the daunting task of washing her head I notice a huge "goober" (what her NS called it lol). Of course it looks infected and all I'm thinking is admission to the hospital, surgery to remove shunt and external drain. We went to therapy as normal and then to the mri (which she moved too much to get a good read). Then up to the NS office. 

He wanted to removed the goober. If he saw shunt immediate surgery was needed. If he didn't see shunt then we would do wound care at home. Thank the good Lord that shunt was not seen. The cause could only be speculated as pressure from the helmet. 

The mri showed the left side as great. The right side, not so much. It's not bad enough to have surgery now but he wants to move the shunt from the top left to the bottom right. The shunt needs to be on the right because that's the side that needs the help removed excess CSF. The reason it wasn't place there before is because of the no bone issue, which we have again. So I don't know if this means a temporary plate will be put in since she will be having a new shunt or what. 

I don't know if it's nerves or what but I'm a wreck. I don't like feeling this way. I hate the roller coasters of emotion. I'm so thankful that she is home with me now. I hate that for a few weeks she won't be in a helmet and have anything protecting her head. I hate more than anything that she has to go through all this. She had a rough day today but for the most part she had her cute smile. That and she was all about leaning in and giving me kisses, telling me it's all good. 

Bye bye rib graft

It makes me so sad to announce that the ribs in Amelia's head are officially being absorbed. I knew this, just didn't have official confirmation from the plastic surgeon. 

Matt and I discussed what we would do next and we decided not to do any more grafts. We are going to do an artificial plate. We need to wait till she is at least 2 to do it. Once older than 2 the skull is 75-80% finished growing. We don't want multiple surgeries so we will wait. I just hope Dr Kelly doesn't retire before then. I actually said "you're old, hope you don't retire by then!" I was so embarrassed that my thoughts came out my mouth. He laughed and said at least I said it. Most just think it! 

This means that Amelia will have to be in her helmet till then (and possibly awhile after the surgery). It really stinks. She won't be able to be a kid. No playing outside, no swimming. Surgery will be when she will really feel the pain after and she won't be able to do anything for a few weeks after surgery. My heart breaks for this little girl. 

It would take a miracle for her bones to stop being absorbed and for them to start growing. I know God has already blessed us with multiple miracles with her but I don't see this happening. I still will hold onto faith, but need to brace myself for the furture. This affects all of us in many ways. I won't be going back to work anytime soon. We talked about possibly trying to have another child but I don't want to be pregnant or with a newborn/infant while Amelia has this surgery/hospital stay/recovery. Waiting at least 2 years isn't something we want to do as we are both getting up there in age and we would like the children to be close in age. But, as always, we will turn to God and follow his lead. 

Amelia was dedicated today

First off, a big happy birthday to auntie earmuffs (aka auntie Lisa)!!! 🎁🎈🎂

Today we dedicated Amelia. This a big thing for us as parents. We are telling family, friends, and most importantly God that we are going to raise Amelia in a home that loves and serves the Lord. This may not sound like a big deal to some, but it should be. God gave us Amelia. He gave her to us to raise to love and know Him. We accept that and are going to try our hardest to do just that. 

The message today at church was about letting others see Jesus in us. Pastor Mike preached about how people want to serve God in their own time and way. That if God wants them to move they will move to the next town. God wants them to have a different job, they say naw. That really got me thinking about Matt and my journey. We felt God leading us down here to Tn. That was a huge move, especially for me, away from all my family. God put it on my heart to teach. And just like the bible states "he gives and takes away". No sooner I felt at home and like I was where he wanted me, he took that. He wants me home with Amelia and that is where I am. It is hard, getting easier by the day, but God has never left me. I hope that when people look at me they can see Jesus. I am nowhere near perfect. I am a sinner. I have the love of Jesus in my heart. I desire to follow Jesus and live my life for him. 

That's what this dedication is all about. Letting not only the world see me live for Jesus's but having Amelia see me live for Jesus. Raising her to know that life isn't what we want it to be. Life is what God gives us. I don't know how God wants to use me, but I will someday. I will know why I have had to go through all these struggles. 

Hydrocephalus Walk!!

Yesterday we participated in the hydrocephalus walk. We had some family walk with us which was awesome. It feels good to know that Amelia has support. We had tons of people donate to HA for the walk. Those that wanted to show support for Amelia but couldn't be there wore blue in her honor yesterday. 

 The Nashville walk brought in over $20,000. This money is important for research purposes. People with hydro have many brain surgeries through their lives. With the money raised the HA is involved in trying to find a cure for hydro. Right now they are working on how treatment can be less invasive. How they can find out if shunts are working with less radiation. It's amazing to see the progress HA has made in the past few years. Hydrocephalus used to be a condition that mothers were told to abort over. Now with more awareness people can see that hydro isn't a death sentence. There is no cure for hydrocephalus but there is treatment. Brain surgery sucks, but it beats the alternative. We are hoping to see many more advances in the years to come. 

Thank you to everyone who has prayed, donated, wore blue, walked, and loved us during this. Know that Amelia is not fighting this condition alone, there are millions living with this condition. So you aren't just supporting Amelia, you are supporting all of them! 

Hip surgery

So today is the day. We got up early (who am I kidding, I barely slept), drove to Nashville, got checked in, went through all the pre-op stuff and they took my bug away. When I see her next she will be in a purple spica cast (I choose the color this time!) 

There is a chance that she won't need to have the surgery and that he will be able to pop her hip back in. Now we all know my luck and know that Amelia inherited that from me, so I don't anticipate to be called back in an hour and go home today. I anticipate a call in an hour saying they are starting surgery and it will be a few hours. I prayed and know that it is in God's hands. I kinda wish her Dr didn't tell me that she may just need to be popped in because I know that's what I'm hoping for and I know when it doesn't happen I will be heart broken. Based on our appointment with him back in June he was pretty sure that she would have to have open reduction surgery. Again, I'm praying for comfort in this. 

Well here we are an hour and a half after we left our sweet girl. We just finished talking with her doctor. He was able to push the ball back in the socket without having to go in a scrap and cut her ball and reattach it. He did have to make a small incision on her upper thigh to loosen a tendon but that's it! The best part is that she gets to go home today!! I can't wait to go see my bug in her purple cast! 

Thank you God for letting her ball go back into her socket without the need for surgery!! 

Happy Grandparent's Day!

HAPPY GRANDPARENT'S DAY!!!

Today is a rough day for me because my parents aren't here to share Amelia's love. But Amelia does have some special people in her life. I am so glad that my Grandma is here to see Amelia. Knowing that she got to see Amelia and how much she loves Amelia just melts my heart! Amelia loves her Busia!!!

There are two special people in Amelia's life that even though they are not her real grandparents they might as well be. GAV and GUB (Great Aunt Vic and Great Uncle Bruce...but I guess you can substitute Great for Grandma/Grandpa hehe). I sometimes wonder if GAV loves Amelia more than I do! Knowing Amelia has her in her life is the best feeling in the world. I know if my mom were here she would love Amelia just as much GAV does. 

Even though Amelia doesn't have many grandparents or great grandparents she sure is a loved little girl!! 

This child is amazing!

I am always amazed by Amelia. I love that through everything she has been through she has a smile on her face! The thing that amazed me this week is her therapy evaluation. 2.5 months ago we walked into the rehabilitation office and were told that Amelia, 6.5 month old Amelia, has the developmental skills of a 1 month old. I knew she wasn't where she needed to be, but that was a shock that she was so far behind. I guess I should have known as she didn't even know her toes existed! 

Tuesday Amelia was evaluated in PT and in OT on Thursday. We wanted a baseline for when her cast comes off (hopefully November 20th). Being so far behind and going in this cast is not a great thing to be going through. The next 3 months will be spent on arm strength, hand-eye coordination and hopefully some upper body strength. She is really weak in the left arm and doesn't even want to push up on it most of the time, so that is something we need to work on. 

PT's eval was basically her neck tilt from the torticollis and core alignment and hip rotation. OT is where her motor skills were put to the test. Amelia was so tired going into therapy. But she did try, for the first half anyway. She started to fall asleep during the second half of the evaluation, poor bug!

Are you ready for me to spill the good news yet?!!! So my 9 month old, brain damaged child tested at 10 months in fine motor skills!! I was floored. I knew she was making progress, but not that much!! You go little girl!! Mama is so proud of you! Official testing for gross motor skills put her at 7 months, but that is when she fell asleep. Her therapist said that she is more like 8/9 months!! YAHOOOO!!!!!!!!!!!!!!! No she isn't crawling (see above with no upper body strength because of the CP) and even though she is trying more and more to sit on her own, she isn't there yet. She does do a good job sitting supported though. 

I can't tell you all the emotions that went through me after that session. One thing that bothers me the most is that she doesn't do things like normal children (sitting, crawling, etc) but I know now that she is playing like she should be, and that she can do things that she should be doing! 

Tuesday is the hip surgery and I will warn you that there will be some sad/angry/hurt posts coming up. The surgery isn't going to bother me (heck after 5 brain surgeries a hip surgery is not going to be so bad), it is the cast. If you saw this little girl and her love for jumping you would feel my pain. I just hope that these next few months she doesn't lose that smile. Because I don't know what I will do :(

9 months old

So I started this after her 9 month check-up almost a week ago. Wow, I'm horrible at this blogging stuff!! 

It is so nice to have a normal appointment. Most parents of 9 month olds take their child to the doctor. We are in the norm here! 

Amelia weighs 19 1/2 lbs and is 28.5" tall. Her weight is the 75th percentile and she is 80th for height. I have no idea where she gets the height from. I'll take credit for the weight but not the height. Her weight/height proportion for 9 months is perfect at 50%! So nice to hear some normal, good news. I'm not starving her and despite a lot of people who have no filter, I'm not over feeding her and she's not fat. So 😝

I noticed a while back an issue with her lip. I didn't know if she was lip tied or not because she didn't have top teeth and I didn't know what to look for, but didn't think it was normal. Well it's not. She is lip tied. For right now we are just going to wait it out. Most kids end up falling and busting it open so why have the surgery if we don't need to. She is Matt's child so it's highly likely she will bust it open and sooner rather than later. 

Amelia did impress her doctor with her grabbing skills as she grabbed the protective cover off the tool she uses to look in her ears. She did this twice before she needed her arm held down. Auntie earmuffs would be proud. She doesn't do well with doctors. 

We are all set with her pediatrician until she is a year old! Once things from surgery settle down I will make the appointment. 

Helmet head

We finally went back to the helmet place. It's been a month since she's been out of the Helmet. The helmet dude (he's not a doctor, not a therapist, so he is the helmet dude) was shocked that the helmet still fit. The only problem was that it pushed her brain up and created a lump at the top of her head. I wasn't comfortable with that and he wanted the entire area there is no bone covered. So she was measured for a new one. So long as there aren't any issues again with insurance she will be in it in 2 weeks. I'm hoping that's the case because the sooner she gets in it the better it will be. Not only will it hopefully aid in shaping the rest of her skull so she can have another surgery, but it will also protect the area with no bone. 

The time she was in her helmet was well worth it. Symetrical her head started off at a 10.5. Normal is under 3. Today she was at a 3.4!! She does have a bulge on the right side of her forehead and that helped a little but the back of her head looks much better. I don't notice these things because I see her 24/7 but helmet dude noticed and the scan confirmed it. I'm glad something finally has gone correct. The length/width ratio has increased, but that was expected because she doesn't have a bone on the right side anymore. 

Amelia really loves her helmet. She got super excited when he put the helmet on her and then got sad when he took it off. That's a blessing because I can't imagine how uncomfortable that is for her and she doesn't mind it. I'm so blessed to have such a happy, go-with-the-flow, compliant girl. She for sure gets that from her daddy. I'm typical type a, everything planned, everything perfect! 

Plastics and NS appointments

Today we met with Amelia's NS and plastic surgeon. Everything looked good. Amelia was scheduled for an MRI in two weeks but her NS likes to have them 3 months post op. That appointment was schedule after her follow-up from her last surgery. So we get to cancel one appointment this month!! (Yes we have to still go in a few months but that's okay). He is also referring her to a rehabilitation doctor. She will monitor Amelia's cerebral palsy and her developmental growth. She will give a plan for PT and OT and help with everything. Yes it stinks to have yet another doctor added to the mix but I think she will really benefit (not just Amelia, but myself too). 

The appointment with her plastic surgeon was uneventful. Still the same plan. Get back in the helmet (we go next Wednesday) and let her grow some before the next surgery. See ya in 6 weeks. 

Tomorrow we have therapy and then on Friday Auntie Earmuffs and Uncle BDB will be here! Even though it's a super short visit I'm excited. I don't get to see and talk to adults with the exception of doctors and therapists. Any time I can have adult conversation is welcome! Plus I miss my family. 

Guilt, heartache and pain

I'm not an open person. I hold my emotions in and try to keep a smile on my face. So sharing this isn't easy for me. For years and years I've seen people having babies. It hurt so bad to know that I would never have a child of my own. Yes we tried adoption, but that's just not the same. I wouldn't feel my child kicking in my belly, I wouldn't experience all the emotions of pregnancy, I wouldn't give birth to my child. I was happy for all my friends and family that had children, but it killed me. Honestly, it still hurts some. Even though we miraculously got pregnant, it took 12 years and tons of heartache and pain to get there. 

Every time I look at Amelia I hurt. I feel so guilty for what happened. It was my job to protect her and keep her safe and healthy and I failed. You can tell me till you are blue in the face that it wasn't my fault, but it will not erase the guilt and pain I feel. I used to sit in her room while pregnant and wonder what she would be like. I would smile thinking about how I would see so many firsts in that room. Her rolling over for the first time, crawling, sitting, her first steps. Now I can't be in there without some sort of distraction without breaking down. Putting her to bed is the worse. Sitting in there, holding her, I just feel so horrible for everything she has been through and everything that she will go through. Watching her struggle with things that should be easy hurts. Thinking about things she may never be able to do kills me. She gets so frustrated not being able to be mobile and it's hard to watch. 

One thing that makes me feel even worse is the pain in Matt. Seeing other babies do things that we don't even know if Amelia will do hurts. What makes me hurt more than ever is the pain in Matt as he says "did you see x doing y? It sucks doesn't it?" I feel like not only did I let Amelia down, but I've let Matt down too. 

 It's also hurtful when people tell us that Amelia is fine or she will do x, y and z. Yes besides her head, she looks "normal" but most of her issues are neurological. Her brain does not tell her body what to do, so she's not even close to crawling. She has cerebral palsy so she is weak on the left side and unable to do things. Despite working with her for a few hours a day and taking her for therapy a few times a week she is still way behind and may never get to where she should be. I have to deal with the heartache of watching her try so hard for something she just can't do. 

 Every step she moves forward she has another surgery that sets her back two steps. She's starting to make gains with her torticollis and then she had a blocked catheter that made her head bigger and weighed it down. She's starting to show some strength in her spine and in a month she will be in a spica cast so most likely after the 3-4 months she will lose the strength in it. 

 Maybe I'm still hormonal. Maybe it's all the stress in our life. Maybe I'm just weak. I try to keep myself busy (in the rare times we are home and Amelia is sleeping) so I don't think too much. I can't stand feeling like this. I can't stand the tears and pain. I will say that seeing this precious little girl smile and hearing her laugh melts my heart. Knowing that all the hurt I have for her she isn't carrying. I love this little angel so much.

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.