Two weeks ago we took our baby into the local ER. It was apparent she hasn't been herself for a few days. It was a struggle to feed her. Feedings were accompanied by her arching her back, flailing out her arms and crying. We comforted her and continued on, chalking it up to belly aches or teething. Her crying turned to screams. I was worried she was having seizures, so we rushed her in. The doctors weren't sure if it was indicative to a seizure given our descriptions and the video we took of her. Their ER was not equipped with EEG so we were sent home to follow up with her neurologist the next day. She was refusing to eat the entire day. We could not even get a pacifier near her mouth without her sceaming. With not being able to get her to be seen by the neuro, the pedi, or a gastro, we did what we thought was best and drove her 2 hours away to nemours children's hospital.
Fortunately they took her in right away. We explained everything and showed them the video, they as well, did not believe it was a seizure and were concerned of reflux or aspiration. They took her to get a chest and stomach xray to look for fluid in the lungs and make sure the intestines weren't twisted. The tests were clear thankfully. In fear of her being dehydrated they put an IV in her hand. My baby at this point has been doing nothing but screaming and crying for 2 hours. Shortly after the IV she past out on my chest and we were sent to our rooms for the night. I have never felt so much pain in my life. Hearing your baby cry in pain and not being able to know what is wrong is beyond words. You can feel your chest tighten, its hard to breathe. You wish you could take every ounce of their pain onto yourself. You want to punch every nurse and doctor that touches her.
Our room was shared with another baby and her family. Im not sure why they thought room sharing with babies is a good idea. Or why in hospitals they have to check on you every time you finally fall asleep. I did have to request a new room. Arianna was exhausted and the poor baby next to her was hooked up to a pump and was in need of a lot of care which required constant check ups and procedures. An overly tired baby is not an easy situation.
Our new room allowed her to rest and she somehow managed to sleep through the night. The crib she was placed in was all metal, about 5 feet away from Jesse and myself. They recommended she sleeps propped up but little miss always flips to her belly. They started her on reflux meds as well. This is where I felt like an idiot. Her primary care physician put her on reflux meds a month earlier which I denied giving to her. The only reason I took her in was for blotchiness when she ate. Non of the other symptoms were ever present. They thickened her formula with either oatmeal of rice cereal.
The next day she seemed to be back to her regular self. They eventually disconnected the IV and we were not able to go home until she was sufficiently wetting diapers. She has always had trouble passing her bowels. Her doctor their said this could be causing her reflux with everything being backed up. They diagnosed her with Sandifer's Syndrom. Basically bad reflux.
Two days after we got home, we returned to Nemour's to see the Opthalmologist. Arianna now has to wear an eye patch for 2 hours a day which really isn't that bad. I thought it was going to be an all day thing. Her one nerve in her eye hasn't been fully developed. The patch is used over the "good" eye to help strengthen the weak one. She is doing very well on it except for that I think she is learning to just fall asleep when its on rather then dealing with it. I do believe it is improving her vision already. Over the past 2 days she is really focusing on using her right hand which she has never done. Its fun to watch her study and hand and concentrate on "getting it to work".
I am officially a stay at home mom and not regretting the decision at all. My day is filled with playing with Ari, doing therapy with her, and researching doctors, hospitals, and all other information I can find. I still struggle with everything emotionally. Especially at night. I find it hard to keep up with the boards of other moms because I feel like its hard to relate anymore. I sometimes feel detached from the "normal" world. Which is okay. My only focus is her and finding answers. In some weird way, once you can accept it ( as much as you can at least ) you are almost grateful. Of course I wish my baby wasn't going through this, but I do believe god doesn't give you more then you can handle. And I do believe she chose me for a reason. And I do believe with the help of a great team, we can change things and we will have answers in the near future.
No comments:
Post a Comment