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.

Sunday, July 14, 2013

NIP

NIP: Nursing In Public. I've done it before; I have three children, all of them have been breastfed, so nursing in public is something I have done many times. However, yesterday is the first time I nursed in public without a cover, and I have to say, I wish I had done it a long time ago!
Joe, I, and the kids went to see fireworks with Tammy and her family. It was at a local festival, so we walked around, let Dustin play some games, got Aryanna a pretty flower halo to wear on her head, and got some funnel cakes. Then we went back to our cars, popped out some fold-up chairs, and relaxed while we waited for the fireworks show. Mira started to get hungry, so I nursed her. As I said, I have nursed in public many times, but never without a cover. I am usually in the grocery store where it is air-conditioned, or at someone's house where I can go into another room. However, this time we were outside, where the heat was already pretty strong, and my vehicle does not have air conditioning. So, I was not going to cover Mira in a blanket and make her sweat and over-heat just so she could get her meal. So for the first time, I just (discreetly) pulled out my breast and let her eat. I honestly wish I would have done this for all of my children.
First off, no matter where you are, when using a cover, you always make the baby and yourself sweat. Always. The skin-to-skin plus being smothered by a blanket causes you both to sweat, and it is pretty uncomfortable, I could imagine it is for the baby, too!
Secondly, when you use a cover, EVERYONE knows you are nursing, and you tend to get a lot of glares! The blanket is like a huge neon sign that says "LOOK AT ME, I'M BREASTFEEDING OVER HERE!" When I nursed Mira yesterday with no cover, almost everyone walking past had NO IDEA I was even nursing. I was showing no more cleavage than I would have in a normal shirt, and her head covered everything private about my breast. A few people looked at me, saw that I was nursing, and continued on their way. I did not get ONE dirty look; not even one! My faith in others was restored a little bit throughout the process, and I have decided that I am DONE with covers. If people cannot handle a breastfeeding baby, then they can choose not to look. I cannot choose to NOT feed my baby, so from now on, I am choosing to do so in whatever way makes her most comfortable, and NOT being smothered by a blanket while she is trying to eat is probably more comfortable for her!
On a different note, Mira did GREAT with the fireworks. Tammy held her and kept her ears plugged the whole time, and there were quite a few moments where she was actually watching them, too! She looked like she was in awe of the spectacle of lights, and it was awesome to see her enthralled by them! She never cried or became agitated, so I am hoping this is a good sign that she won't have hearing sensitivities. Dustin and Aryanna had a blast, as well, and it was all around just a great family outing!
So no more breastfeeding covers for us! Besides, the more people see it, the more tolerant society will need to become. If you want things to change, start with yourself! So I am starting! I am going to make feeding babies acceptable in all forms! If you want to bottle feed, GREAT! If you want to nurse with a cover, GREAT! If you want your breasts out and your baby not covered in cloth to eat, GREAT! Babies getting nutrition is all that matters, and as long as you are taking care of your children, there should be no judgment! You'll never get it from me, and I hope not to get it from others! But if I do get a dirty look, or a pitiful comment, maybe I'll throw a blanket on their head and say "Now, go get your lunch and see how you like it. Have a nice day!"

Thursday, July 11, 2013

Mira, The Con Artist?

Today Mira had her weekly in-home therapy session through early intervention. We usually do her therapies at1:30 on Thursdays because it seems to be a good day for scheduling, and normally at 1:30 she's happy and alert, so ready to participate.
Today, my early intervention coordinator also attended the appointment along with Mira's therapist so we could fill out a questionnaire to monitor her progress. After the questionnaire, it was time to do Mira's therapy. Two stretches in, she started doing the "pain cry" so her therapist thought we should give her a break. This cry usually means gas bubbles, so I was working on getting gas out of her and changing her position for about ten minutes when her therapist thought it might be a good idea to just skip therapy for the day. He said he'll give her a get out of therapy free card because he doesn't want to make her work when she's not feeling well. So I continued to hold and soothe her while we set up next weeks appointment, and then our visitors left.
Roughly 20 seconds after they closed the door upon their exit, Mira stopped crying and was all smiles. I think she conned us. I think she metaphorically put her foot down! I think that this week, she drew the line at the harness and refused to partake in her hour therapy session where she has to work. And once again, I can't say I blame her! My beautiful little miracle, and con artist, has had enough for this week. I guess we'll see how she feels next week!

Monday, July 8, 2013

Hip Dysplasia

Mira's right hip is not forming into the socket the way it should, which is called hip dysplasia. We went down to Pittsburgh today to find out if it had developed normally on its own, or if we would have to have treatment for it, and we also had her audiology appointment today to make sure she is hearing properly.
Her audiology appointment went great! They said everything looks completely normal! Then we had her hip ultrasound, and then went to spina bifida clinic to get the results of her hip ultrasound. In spina bifida clinic, they informed us that her hip dysplasia has not improved, so now she has to be in a harness. The harness wraps around her midsection and shoulders and straps down to pieces attached to her legs. It holds her legs up in the air so that her thighs are jutted out at a 90 degree angle. Apparently, this position is optimal for encouraging the hip to develop into the socket properly. We have to wear the harness on her for at least half of every day and all through the night when we sleeps. We go back down in 4 to 5 weeks to monitor her progress.
While it is disheartening that she has to deal with another obstacle, it wasn't as big of a kick in the gut as her bladder problems were last time. The issues with her bladder and sphincter caught us completely off guard last time. This time, however, we knew what we were going down for, and we knew what the possible outcomes were, so we were prepared for this news.
It's just going to take a few days, at least, to get used to. She hates it! She screams right now when it's on her because she cannot move her legs into her favorite position. She likes her left leg tucked up under her butt, and she likes her right leg completely extended out... She can't do either of these with the harness on, so she screams because she doesn't like feeling restrained. I honestly can't say I blame her! I'll post pictures of her in her harness soon. Maybe after she gets more used to it so I don't feel like I'm capturing pics of her in a torcher device.