About Me

United States
My fiance (Joe) and I (Caytie) just delivered our third child. We have a son named Dustin, age 4, a daughter named Aryanna, age 1, and our new little bundle's name is Mira, and she has been diagnosed with spina bifida. She has a myelomeningocele, a chiari malformation, hydrocephalus, and a club foot. She had surgery the day after she was born on her myelomeningocele, and surgery when she was 6 days old to place a shunt in her brain. She is facing more surgeries, a lifetime of recovery and monitoring, and we will all be facing the journey of spina bifida. Prayers and kind thoughts are always welcome, and if our story can help others, that would mean the world to us. Spina bifida is a fairly common birth defect, but there's nothing normal about facing potential danger with your child. So this is our story, the journey of spina bifida, as we live it.

Monday, April 22, 2013

Way Too Eventful!

Yesterday was completely uneventful... I wish today would have been as boring!
Poor Mira had a painful day! She had IV sites in both hands, and both of them went bad at the same time. Sometimes the body rejects IV's, especially if they've been in there for a while, because the body acknowledges an invader in the body, so it shuts down the pathway of the invader (the IV). Both of Mira's went bad at the same time, so they had to try and get another IV going. They got one in, but it immediately blew. They tried other spots of her body to get an IV in, and no other potential IV sites were working. As you can imagine, during all of this poking and prodding, Mira was losing her poor little mind, and just wanted to be left alone. Nobody likes needles, especially a baby who doesn't understand why she's getting poked over and over and over again. Eventually the charge nurse said enough, and that Mira's body simply needs a break! Luckily she was eating enough to where they didn't have to worry about her being dehydrated, so they were able to give her a break and they got an IV into her foot later in the day. So her torture is over for this 24-hour period, but I with she could've just had another content, lazy day.

The day was also unfortunately eventful for me, as well. Yesterday morning I was getting headaches off and on, and by the end of the night, it was a very consistent headache. I thought I would feel better once I got some sleep. I was mistaken. When I woke up today, I felt ten times worse than I had the night before. My headache was a borderline migraine, and my abdomen was much more sore than the day before along with being really nauseous. I called my OB, and they told me to come over to the ER. They got me hooked up to an IV, I slept for three hours, and was feeling noticeably better when I woke up. Thank goodness it wasn't actually what they call a "spinal headache" but we believe it was a natural and unfortunate side effect from the spinal with my c-section. The ER doctor wrote me out a prescription for Benadryl, which I need to use to keep the headache at bay before it makes me throw up (which would be a nightmare with a frssh c-section incision), and told me to make sure I'm sleeping well, keeping my stress levels low, and sneaking some caffeine into my diet here and there. I am feeling much better now, and I'm able to eat without feeling like I'm going to vomit. Thank God! All I could think was how stupid it is for ME to be sick right now when Mira needs me! I told the doctors that I don't have time for me to feel like crap! But, this is a reminder that, as a Mother, you can't possibly take care of your children to the best of your ability if you're not taking care of yourself. So I'm getting some rest now while my sister stays with Mira. We were just face timing, and Joe and I will be back to Mira's side before she goes to surgery tomorrow.

Mira had her ultrasound today to monitor her ventricles and see how they reacted to having her drain clamped. Her head circumference increased by half an inch, and her ventricles filled with pressure, so it is confirmed that she needs a shunt. She will be leaving her room for surgery at 7:30 in the morning tomorrow, her surgery will begin at 8:30, and it will take roughly an hour and a half. After her surgery, Tammy, Joe, and I will begin training on how to care for her at home. This includes what neurological symptoms to look for, how to catheterize her, how to care for her incisions, how to hold her without disturbing her incisions, and more. They think we can finish training, and possibly be released by Friday! I can hardly believe it, but in ready for her, and I just absolutely cannot wait to hold her in my arms!
So, that is the rundown of the day! I don't think I left anything out, but I'm a little groggy still, which is why I'm going to get some sleep now, so if I left something out, I'll be sure to add it in tomorrow. I love you all! Sleep sweet, as I'm hoping Mira and I will tonight, tomorrow is a big day!