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.

Wednesday, April 17, 2013

Getting to touch Mira for the first time!

They brought her in, and took her away within roughly sixty seconds. Today was the best and worst day of my life. I vented my frustrations about my poor treatment at this hospital, but that doesn't even compare, in any universe, to how heart wrenching it was to let them wheel her away from me. I got to feel the softness of her arm skin, and the light touch of her hair for a few seconds, and that was it. I couldn't smell her or hold her or feed her. Touching her and talking to her for those few seconds was one if the best moments I've ever experienced, but all too soon, the transport team said "Okay, we have to get moving now." and my world shattered. I took my hand off her skin and held my head to try to keep my sanity in, but it hurt more than any physical thing I was feeling in that moment. I tried to hold the sobs in, but I just couldn't. That moment, releasing her skin from my own so they could close her incubator and take her away, was one of the most difficult things I've ever done. Very few things actually hurt a person's soul, but that was one of them... it hurt my soul.
I held my head, I grabbed my chest, I tried to focus on the physical pain I was in to distract myself, but it didn't work, there was just no holding in that cry. I'm glad I got to see her at all! I'm glad I got to touch her at all... but I'm not gonna lie, I was really banking on getting to spend more time with her than a singular minute, and I was crushed when that was all I got... just a single minute. One if the best moments of my life, touching and seeing her, followed by one of the worst moments of my life, letting her go.



Trying To Have A Baby In Chaos!

Joe and I arrived at the hospital and were checked in by 10:30 this morning. The c-section was scheduled for 1 o'clock in the afternoon, but after waiting a few hours, being monitored, giving blood samples, prepping for surgery, and asking questions, we kept getting pushed back. First we were pushed back because an emergency came into the ER. (It turns out, last week, the maternity operating rooms and overnight patient rooms got flooded, so they are having to perform c-sections in the regular OR's, and they have no rooms in the maternity section of the hospital set up for patients to stay the night in). So, we got pushed back for an emergency from the ER, and then we got pushed back again because the anesthesiology staff was incredibly understaffed and overbooked. After five hours, they still didn't have a room set up for us, so before they took Joe and I to the OR, Tammy, Joe's Dad, and Joe's Poppup had to take all of our bags back outside to our cars because they didn't have anywhere for us to stay.
Finally, at about 3:30, they wheeled Joe and I down to the OR while Tammy, Joe Sr., and Poppup waited in the waiting room. As Joe and I were being pulled up to the OR doors, the staff inside started telling my nurses not to bring me in because they weren't actually ready yet in that room. However, they already had a room ready for us, OR 10, for an hour and forty minutes, but that OB changed their mind and insisted on waiting for this room, OR 8. This didn't seem to make sense to any of them, nor to Joe and I, but ten minutes later, they were ready and started prepping me while Joe waited outside the OR.
They were very kind and likable staff members, and it was easy to trust them. Their system is clearly flawed in a very chaotic and unorganized way, but I am sure that each of them would be superstar medical professionals if they were in a better-operated facility with less chaos. So as Joe waited outside (they make him wait until after the 'scary' stuff is over before he is allowed into the OR with me), they prepped me by moving me onto the operating table, giving me my spinal shot that contained the local anesthetic (they excluded putting morphine, a normal ingredient added to the anesthetic shot in almost all cases, in my spinal because during my delivery of Aryanna I had an allergic reaction to it, so even though the spinal acted as a local anesthetic, it would ware off quicker and would not act as a pain reliever), inserting a catheter since I was numbed from the bottom of my ribs down, giving me meds to counteract the nausea and vomiting that is often caused by a spinal, and by cleaning and draping me appropriately for surgery.
When I was properly draped, numbed, and drugged, they allowed Joe to come in, but their drapes were covering my arms so I didn't even get to hold his hand. However, just knowing he was right behind my head was enough to keep me relaxed and breathing. Which, breathing is actually rather interesting and deceitful after receiving a spinal. The bottom part of your lungs are actually numb, so your body makes you think you're not getting enough air or deep enough breaths, when really you're breathing just fine, you just can't feel it. So that's always interesting!
Mira was born, weighing in at 8 lbs. 4 oz. and 20 inches long! They let Joe go over to the corner she was in and take a few pictures with his phone to bring over to me. I could hear her crying, but I couldn't see her at all so I stared at the pictures of my beautiful baby girl that Joe held in front of my face for me. Before taking her up to the NICU, they wheeled her over beside me so I could actually lay eyes on her for about 15 seconds, and then Mira, Joe and the NICU staff left the room.
I dozed off here and there while they finished up my surgery, and they had me in the recovery room at almost 5 o'clock on the dot. They told me I would be in my own room by 6 because I needed to be in recovery for at least an hour, even though I was already lifting both legs and my hips by 5:30. They almost took Mira away to Children's without letting me see her, but I kept insisting to my nurse to call whoever she needed to call so I could see my daughter before she left. I got to see her for about one minute, and then they left.
After that, it was six o'clock, I needed to get to a room so I could call the midwife to come pick up my placenta, i needed to star pumping as soon as possible (which they assured me previously that they would bring me a pump right after delivery to start stimulating breastmilk production ASAP....very very important!), I still hadn't received any pain meds, and it had, completely unnecessarily because of their terrible scheduling, been almost 24 hours since I had eaten or drank anything. 6 o'clock came and went... no room, no food, no pain meds, no breast pump. 7 o'clock passes... no room, no food, no pain meds, no breast pump. By 8 o'clock, I was beyond frustrated, in a ridiculous amount of pain, and completely starving. My stomach would growl, and the vibration of it would send pain shocks through my incision which was no longer numbed in any way.
Finally at 8:30 pm, they got me to a room in a completely different area of the hospital with staff that aren't even trained in maternity/post-natal care. BUT, for the first time, I felt like I was with staff members that cared enough to figure things out and take care of my needs instead of just make excuses and blame other people for not taking care of me properly. They finally gave me pain meds that made it tolerable to breathe deeply. They got me food. They got me my breast pump. And damn it, they had some actual compassion and showed it! By this point, it was too late for the midwife to be able to come pick up the placenta, so now I'm going to have to wait at least a extra day or two before receiving those breast milk helping benefits thanks to this hospital's terrible functioning. I'm also having a hell of a time getting any milk out of my breasts because I had to wait almost four hours later than I should have to get a jump on milk production.
I understand that things get hectic, that emergencies happen that change plans, and that many people try to do the best they can with what they have. BUT, there is absolutely no reason why it should take a SCHEDULED c-section patient, 10 hours after admittance to get into a room. It's not like I was a surprise, or that they didn't know I was coming... they just didn't care enough to plan on where to put me once the surgery was over. Also, when you tell a patient she can't eat at all the day of her surgery, and she listens, and you tell her she can eat afterwards, you damn well better feed her. Instead, because they took so long to get me into a room, I asked if I could finally eat when they got me into my room because I had been asking the whole time in recovery (over three hours of wasted time) and then the nurse goes "Oh, well, the cafeteria is closed now so I don't know what you want me to do, ya know." Hmmm.... Well, I wanted you to feed me when you said you would, hours ago, and I wanted you to NOT promise me food, and then personally be the one who screws me out of the chance to eat by wasting time for no reason instead of just getting me a room and letting me eat for the first time in a day! I was so frustrated at that point with their complete disarray that lead to negligence during my care the WHOLE day, all I could do is cry and complain and try to avoid a total meltdown. My sister, seeing where this was headed (probably me screaming unintelligible words at all the nurses because no one understands mad, ugly cry, yelling) said she would go find me food herself and until then to eat the snacks out of her purse and to stay calm. So she went and found me a salad. It was delicious! But my point was, if my sister hadn't been there to save the day, would they have made me wait ANOTHER day to eat simply because they suck at planning, multi-tasking, or care-taking?
I am honestly incredibly glad now that Mira was taken over to Children's hospital because I know that facility is top notch in every way, and I would hate to think that my child, who needs a lot of help right now, was getting treated as poorly as I have been all day.
Okay, now that I vented about the terrible and completely non-functional West Penn Hospital, and talked about the ins and outs of the procedure, I'll write a post about the things that actually matter, like Mira! Thank you for letting me vent, new post (that's not as bitchy) coming right up!