Decided to do some arts and crafts projects this morning before OT! I made a couple of books for Emma. Very simple high contrast basic books. Twinkle twinkle little star and the itsy bitsy spider. Also, purchased some pool noodles and cut them in half then covered with fabric. These are great for belly time!
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A look back at surgery
I recently stumbled upon a note in my phone I had completely forgotten I had written. Probably because it was 4 days after Emma’s craniosynostosis surgery and I was sleep deprived and a basket case. These are completely real and honest thoughts I had. I’m only sharing them because maybe someone else has had the same thoughts and felt alone. You’re not.😓❤️🙏
Today is..stressful. Emma had her Cranio surgery on Monday and we’ve been in the hospital all week. I’m beyond exhausted and stressed and overwhelmed. People tell me that Emma picked me as her mom because I can handle all of this. I’m only one person. I can only handle so much. I’m so stressed out all of the time. I love Emma more than anything in the world but sometimes I don’t think I’m as strong as I need to be. Why is this fair? Why does Emma have to go through all of this awful stuff. What 10 month old deserves this? I would give anything to trade places with my daughter. Literally anything. My heart explodes into a million pieces when she is in pain. I wish she didn’t ever have to experience any pain like this.
To this day, I still feel responsible for Emma’s hydrocephalus. If it was the anti nausea medicine that caused it then it’s my fault for flying and my fault for taking the medicine. Why didn’t I just deal with the vertigo. Emma would have. She is much stronger than I am. I admire the hell out of my baby. There are grown adults, including myself that would never be able to go through what Emma has and turn out as amazing as she has.
I have so much love for this baby it hurts sometimes. I cannot imagine my life without her and am so very grateful that I didn’t have to. I just wish there was some way to not have her experience anymore pain in her life. She doesn’t deserve that. Not that any baby does. She finally fell asleep around 8:45 after fussing for hours. Her drain keeps tugging on her skin and she can’t get comfortable. I want to cry every time I look at her. I swear, sometimes I don’t think I’m strong enough to be this baby’s mother. I had to leave the room and go into the bathroom to cry after she finally settled down. I may have gotten 10 hours of sleep in the last 4 days. I’m sleep deprived on top of all this. My husband can’t begin to understand what I’m going through right now or this entire time. I don’t blame him, most people couldn’t possibly understand. He didn’t have to carry her for all that time knowing there was something wrong with her. He didn’t feel her kicking or hiccuping or moving inside of my belly.
I honestly don’t know how I could ever love another human as much as I love my daughter. That makes me nervous to have another baby. How could I possibly focus on making Emma the best person she can be if she has a little brother or sister I need to care for? Emma’s amazing but she still needs constant therapy and extra attention. I would feel guilty trying to raise another baby and give Emma everything she needs from me.
That’s it for now. Emma is getting her drain out very early tomorrow morning then they will monitor it for a few hours before they discharge her. Her incision looks great and her swelling isn’t terrible. She’s the most beautiful, amazing soul I’ve ever met. I can’t wait to see what this surgery does for her progress and development.
How did you handle your child going through and recovering from surgery? How do you have another child once you have one with special needs? How do you give them the best life without giving them all of you?
Sleeping..or lack of
Emma hasn’t slept through the night since before her craniosynostosis surgery. It’s awful and I don’t know how to get her to sleep through the night. She wakes every 2-3 hours to nurse then falls back asleep. She never actually stays down for more than a couple hour stretch. We get like 6-7 hours once a week but that’s about it.
Has anyone had this issue or have any suggestions?
Rollin’ Rollin’ Rollin’!
Yay Emma! We got her a new insert for her walker from “Kidco”. It’s a great cushion for her and adds more support. She made some small moves in her walker and even reached for her toys!! We are really working on having her reach down for toys since it’s difficult for her to do that. She’s making such great progress it’s just a very long and slow process.
I’ve included the screenshot of the cushion in case you’re interested in ordering. It would be great for any baby just for some added support!
Reiki
Once we found out that we were having a baby with hydrocephalus, my Dad suggested Reiki. If you have no idea what that is, you’re not alone. I was not familiar with it either until my pregnancy. Reiki is “a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient’s body and restore physical and emotional well-being”. I began going to reiki on a weekly basis a few months before Emma was born. I had 2 reiki masters working on me and my unborn baby. It was definitely a wonderful experience. It made me feel at peace with everything that was happening. I felt relaxed and let my mind just go to another place. It let me not think about my baby for 1 hour and what was going to happen to her once she was born.
Once we found out that Emma needed her craniosynostosis surgery, my Dad suggested Reiki. We resumed our weekly session for a few months up until surgery in January. They worked on Emma and myself separately. I really feel that it helped Emma and helped me as well.
Reiki was truly a saving grace for me and I am forever grateful for Emma’s 2 new “Aunts” who have helped us throughout this journey.
Look then touch!
Yay! Emma finally looked before reaching for her toy on the highchair. Amazing! Such a small feat but she has so much trouble seeing. The CVI is really preventing her from making big strides but we are getting there slowly!!
This is a great toy, as the flower spins it makes a clicking noise and grabs Emma’s attention. You can find it on Amazon-pictured below.
Learned lesson
If I can give any advice about having a baby with any kind of issues it would be to ask questions. Never feel like you’re annoying or being a pest. This is your child and in Emma’s case, she was an infant when all this started and she can’t speak for herself. YOU must be your child’s advocate. YOU must question the who, why, what, where, when and how. Nobody else will fight for your child like you will and nobody else will love your child like you do. This was definitely the hardest lesson learned.
Therapy equipment
Emma has so many great pieces of therapy tools and equipment that my family and I have either made or purchased. I will post pictures of some of our favorites and most useful. The best thing we’ve made by far is Emma’s therapy platform swing. It is hanging in the corner of her room and we use it for sensory right now. Emma was not tolerating any kind of movement and her PT suggested we build a swing. Luckily for us, my husband is extremely handy and he did just that. Emma uses her swing on a daily basis and it’s awesome.
Please contact me if you’d be interested in purchasing one of these therapy swings from us. We are looking into building them for other families who can’t afford to buy the “commercial” therapy swings and aren’t able to make one themselves.
GoFundMe
Please consider sharing our link, as we have greatly benefited from the amazing generosity and selflessness of friends, family and complete strangers alike. This has been an absolute blessing for our family. Thank you!!❤️😁🙏
Today..OT and feeding
Today we worked on self-feeding with our absolutely amazing Occupational Therapist. Emma is having trouble seeing her food since her vision is not great (she has CVI-cortical visual impairment). We are really trying to get her to reach for her food on her tray. Emma did put her fingers in her mouth after a few bites which her OT was thrilled about! She’s gotten great with holding her pouches and also using a straw. She even grabbed for her straw while drinking! It’s incredible how such small accomplishments impact her life so much.
