I started a journal for Alivia after we got home from the hospital, I recommend doing it to everyone. With everything you have to deal with it’s nice to keep a log of how much baby sleeps, eats, what their day was like, any questions you may have for your doctor, when I administered Tylenol, and how many diaper changes. I also wrote every day a small journal entry of what we did, so someday she can see what life was like. (Especially if she ever wants to send me to a retirement home, I did it for you, now you do it for me lol) I never expected life to be so different, but the same! She was back at doing all her crazy stuff, playing on her mat, eating, testing the decibels of her voice. Handling her became something we had to learn how to do differently, we had to be very careful of her head and belly. Bath time was also a bit difficult, her incisions could not be soaked too long, so we would rinse her quick and gently dry her.
Breastfeeding was scary, I can remember how I would try to avoid feeding her on my left breast so her incision was not squished. There were days I was very engorged from avoiding that side. I decided to surprise her taste buds and gave her carrot and apple puree to taste, she loved it. Something new and exciting in her mouth, another good new experience to add to the positive list. The follow up at Dr.Mehta’s office after surgery went amazing they were happy with how everything was healing and her head stopped growing, thank god! My girlfriend came to visit us from out of province, her son was born 2 weeks after Alivia, and we have known each other for ages. She and I have always had a special bond and even though we have been friends for more time long distance, we are strong. Having another baby in the house was nice because he kept Alivia entertained, and kept me sane as well. With Hydrocephalus I learned that my head would never be at rest. With Alivia being an infant and not able to speak, we had to use our parent instinct to watch if her shunt was not malfunctioning. “You think she doing that because of the shunt?”, “Why is she crying? Is it the shunt?” Also with her recently out of surgery, we had a 3 month period of worrying if her shunt may get infected. We kept her pretty isolated, any kids that were sick or stuffy we would keep her away from. Maybe that was the crazy mommy and daddy coming out of us, but we felt comfortable in doing everything we could to keep her healthy. It seems scary, but you know your baby best! Anything that would be weird or off, we would question ourselves, and power text Wendy. I don’t know if everyone has someone to call if they have concerns? But Wendy is the sanity guardian angel I mentioned earlier. She herself has a child that has Hydro, and on top of everything that she goes through on a day to day basis, she takes on all of us crazy mommy problems too. Her daughter is Olivia as well and has been through so much more than our Alivia. Her surgery count is in the double digits, and even though she has seen so many hardships she is the most positive amazing girl. I admire her and Wendy, especially since Wendy has to be a mom, and a personal counselor to all of us. Half the time my concerns were just false alarms, and she would calm me down and cheer me up. I wish everyone had someone like her! I think if I didn’t have that support system, we would have been a frequent flyer at the Emergency room. Hydrocephalus becomes a part of day to day living for you, and your child. Even though at first it is scary, it is you and your child’s new life, you adjust. (As much as it sucks, you do!)