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.

Saturday, April 27, 2013

Sisterly Love

Today was a bit of an emotional roller coaster!
Mira, even though she is consistently eating 65+ cc's per feeding and they only wanted her to be eating at least 55, is still losing weight. When they did her nightly weighing tonight, it showed that she lost another 2 ounces in just the past day. I just don't understand why she's still losing weight! We've been focusing so much on monitoring her consumption, and all day Tammy and I thought everything was gong great, just to find out that not only is her weight NOT better, but that it's still getting consistently worse. All we can do is keep feeding her, and hope that her body comes to terms with all the trauma it's been through so she can start gaining weight! Fingers are crossed, and lots of prayers are being sent up by yours truly.
Mira's weight loss wasn't the only thing that was difficult to deal with at the end of the night, Joe already had to leave yesterday, and tonight my sister had to go home. We knew all day that she had to leave at some point, but we both kept stalling and putting it off. I know that not everyone is blessed with being really close to their family members, but I only have a few people that truly get me. They understand more about me than I understand about myself; those people are my fiancé, Joe; my friend, Allison; and my sister; Tammy. When things are tough, they are who I turn to; when things are great, they are who I want to share it with; and when things are boring, they are who I want to be bored around.
Tammy has been with me every step of the way through all of this. She came with me to my OB appointments, when Joe and I were first told something was wrong on the sonogram, we went to her work so I could cry on her shoulder, and when we went in to deliver Mira, Tammy stayed in the hospital with me and never left my side until she had to leave tonight. It was very hard for both of us. I'm lucky enough to have a sister that cares so much about me, but also knowing that she's my best friend is a blessing I would never trade.
When the nurse practitioner came into our room to discuss Mira's weight loss, Tammy told her she had to leave tonight. I started crying right after she said it. Then Tammy started crying. Then the nurse practitioner started crying. After she left the room, Tammy and I sat on the couch, so we could hold each other, and look at this miraculous baby while we cried it out. We know we'll probably see each other in the next week, but neither one of us wanted her to leave.
We packed her bags up, and walked to her car together. We had been joking and laughing together during our walk, but as soon as we hugged each other goodbye, we started crying again. I told her how thankful I was to have her, and she told me how proud of me she is through all of this. She's my big sister... my support system... my footsteps to walk in... But tonight, we were simply two people hugging and crying in a parking garage because we love each other so much, we couldn't stand the idea of leaving each others' side.
I already miss her dearly, and I love how much she loves my children, but I know that as soon as Mira and I get home, Tammy will be there, because she's always there, and it never fails. For now, I'll be able to get my practice in for taking care of Mira by myself, which is probably a good idea anyways to prepare for bringing her home.
Right now I'm just praying for her weight to start coming up, and I'm thanking God that I have the sister I have! I love you, Tammy, and I thank you for being the person you are!

Urine Has Never Been So Interesting!

Mira has been eating about 70 cc's each feeding, but Tammy noticed each time we feed her that amount, she always spits up. We may have gotten so scared about the feeding tube idea that we started over-feeding her, so we cut it back to 60 cc's per feeding, and we'll see how that goes. Because of the focus on knowing exactly how much she's consuming and exactly how much urine she's expelling, we have put nursing on hold. For now, I'm going to pump so we can see exactly how much she is eating, and we'll revisit breast feeding in the comfort of our own home.
Because we are monitoring her feeding so closely, and she is still not gaining weight, the nurses informed us that we won't be discharged today, and that the absolute earliest we will be discharged is Monday. Because of this, Tammy and Joe cannot stay until the end of our hospital stay, as Joe is expected to go back to work Sunday, and Tammy has to be back at work on Monday. Joe decided to leave tonight to get some more of our running done, to get our house more Mira ready, and to take a lot of our items that we don't need here back home. Tammy will stay the weekend, but head home before she has to go to work.
After Joe left, I ended up calling him a few hours later with some very good news! As the swelling in her spinal nerves goes down from the trauma they've endured during surgery, more function and sensation is developing from her waist down. So I called Joe to not only tell him that she's been moving her legs, but for two diaper changes/cathing times in a row, she peed her own diaper and we got nothing from her cath! This means that she actually emptied her own bladder! This is the first time since she was born that this has happened... TWICE! Joe and I celebrated over the phone, and he told me to give her a BIG kiss from Daddy because he's very proud of her! Tammy and I couldn't get over how much of a huge step this is for her! I never thought urine would be so interesting!
Every time I think I couldn't be more amazed by my children, I am proven drastically wrong! The beauty of every little step ahead they accomplish is so wonderful... I am left in awe over and over! After everything Mira has been through in less than two weeks of living in this world, she has taken it all in stride, overcome every obstacle thrown at her like it was no big deal, and still manages to be absolutely adorable! I don't know how she does it, but God certainly knows, and Mira absolutely astounds me with her resilience, strength, and beauty!