A TAIL of strength, will, love, HOPE, and MIRACLES
Sunday, May 13, 2012
Best Mother's Day/ Mother's Day weekend. Ever.
A very COMPLETE unexpected surprise from Charli when she came home from Daddy's.
It made me cry. The kindness and thought put in to it means more than anyone will ever know. Thank you Grandma Kitty <3 Happy Mothers Day to you, Mema, Carrie, and Marie.
A gift from my IS family. My angels here on earth, who wanted to assure safety and sanity on my part with her being in the big girl room. Most wonderful surprise, an amazing gift from some amazing women that I am proud to call friends, although they have many titles.. super moms, angels etc. Thank you all for such a great weekend.
Charli (Charlotte) was born on July 1st, 2008 at 11:34 am. She weighed 6 lbs 11 oz and was 19 inches long. She was almost 4 weeks early. I had an emergency c section after a very rough few days and a failed induction, where she was decelerating after the pitocin, and while I was pushing. Charli was seemingly fine when she was born, she cried, her apgars were 9/9. She spent some time with me in PACU, and they checked her sugar..it was 29. The cut off for the well nursery was 30. The neonatologist said feed her and see what happens. We feed her (8 ml) she spit up, they checked her sugar again, it was still 29. They decided to send her to the NICU finally. She rolled away with nothing but a sugar problem.
Several long hours later, after my husband kept trying to see her and we were told 45 more minutes, 30 more minutes, another hour..he got in to see her. She was on a vent, had an umbilical line, lines in both arms. The dr's told him her platelets were very low and she needed a transfusion and he needed to sign for permission. My husband doesn't have much in the way of a medical background, so he had no clue what was going on. I'm a nursing school dropout (circumstances beyond my control..2 surgeries in 6 months) and have worked in health care for over a decade. Had I been there I would've passed out I'm sure. He comes in the room and I excitedly ask how she is, but I see his face. He tells me about the vent, the platelets, they are starting antibiotics because her lungs are full of fluid, she was having difficulty breathing, and she has a pulmonary hemorrhage. I'm absolutely dumbfounded. How does my perfectly fine little baby go from my arms to the NICU and all of a sudden become critical in a few hours? The next several hours are really a blur for me, but when I went to see her later that night they told us she was posturing, and they wanted to order an EEG to rule out seizures. We anxiously await the EEG, and then for the neurologist to come in and read it, and then wait for word. Finally around 6p on the 2nd the neonate and the neuro come in to my room. My heart automatically dropped when I saw both of them. I don't even know why. (some time before this sitting in my bed I got tunnel vision and felt as if I was going to pass out, perhaps a precursor for what was about to come). The neonate introduces Dr. F to us, and he PROMPTLY tells us (in a room full of my visitors, as well as my roomies visitors) "your daughter has brain damage." Just like that. No this is what I think, I think this may have happened. Just "she has brain damage" I lost it. I didn't even notice the pain in my incision as I sobbed hysterically not even able to comprehend what he had just said. I just looked at him with a thousand things running through my mind. Not able to speak. He proceeded to tell us she had little to no normal brain activity on the EEG. He wasn't able to really tell us much else, because as the neonate told us..he hadn't actually gone in to look at HER yet, just the EEG strip. He left to go look at her, and sometime later the neonate came back to tell us that he was impressed with how good she looked compared to her results. He wanted to repeat the EEG and order an MRI. This will happen in a few days. Hind sight is a funny thing. Had I been able, I would've demanded the MRI then. So finally on July 7 she has her MRI and EEG. The EEG showed marked improvement. She has regular sleep/wake states, still with abnormalities, but showed activity. The MRI devastated me. Bi lateral damage, but more so on the left. They didn't tell us much. They weren't sure what we were up against in terms of how this would affect her.
During her 13 days in the NICU she had 7 days of antibiotics, a spinal tap, several days of potassium, one blood transfusion, was weaned off the vent after 3 days, and on CPAP for another several days, tube fed until the day before we came home, got some time under the bili lights. I'm sure there are things I'm forgetting right now. She pulled her vent out 3 times, and the feeding tube too many times to count. They called her the fiesty one. That she sure is.
Charli came home July 13th. All of the dr's and nurses were amazed at how quickly she turned the corner from the first 48 hours. When we saw the neuro at 7 weeks and walked in he said "about your daughters stroke". WHAT? What did you just say?? He said "yes, we discussed this before, she had a stroke." I almost passed out, then almost screamed. You didn't tell us that I said. He said, sure I did, we discussed it because you said you had a stroke when you were little. I was like WHAT!!!!!! Do you have the right chart? He said "you didn't say that?" I was like NO!! Needless to say I didn't feel comfortable that he actually knew what he was talking about. However, he was very impressed with how well she was doing. All of her dr's were. Everyone said to look at her you would never know anything happened. Until about 3 months. That was when I started noticing her favoring her left side. I didn't know it was an issue at first. My husband said maybe she is going to be a lefty. I wasn't aware that babies weren't supposed to favor sides. We had our eval with the developmental ped and he diagnosed her with hypotonia (although she has very mixed tone, lower extremeties are more hypertonic, trunk and right arm are hypo) We had an eval with EI over a month ago, and are waiting to start PT. Charli was diagnosed then with a strong ATNR to the left which is contributing to her difficulties with the right side. At that time she would not look midline or to the right really, only to the left. Since the original eval, when we had our next meeting she had been looking midline more, to the right, and holding her head up much better. She had even rolled front to back a few times. She has done quite alot since our eval with EI. She is now rolling front to back, back to front, will reach for toys midline now with her left hand , will put her right fist in her mouth, and if she has a toy in her left hand and stuffs it in her mouth she brings her right fist us to her mouth with it. She has the most amazing smile, and the cutest laugh. She snorts like me sometimes. Her eyes are so bright and beautiful. She is amazingly perfect. We are in the process of sending her records to Childrens Hospital of Philadelphia for a second opinion (we have never actually gotten a diagnosis..it's always hypoxia vs infarct vs hypoxic ischemic encephalopathy.) We have never had other tests run, they haven't been able to tell us is it going to happen again, why did it happen , when did it happen..etc. I refuse to sit back and not get answers. I do not like our neuro, or our dev ped really. They both have a lot of inaccuracies in their charting when it comes to her, and it makes me very uneasy. I would like to have her evaluated by physicians that specialize in stroke, as I don't feel we are getting the kind of treatment we should be here. So I have to gather a few more things and send her records off, and hopefully we will have an appointment in the next few months. We will hopefully be meeting with the PT for our first session next week. And everday I look at my little fighter, my monkey as I called her when I was still pregnant, the most amazing part of my life, and I thank God that she is here with me, smiling back at me.
I'll post about my delivery and the few days before that soon. It's bedtime! I hope to help contribute to raising awareness by telling our story, and plan on becoming actively involved in fundraising and awareness for pediatric stroke. I believe it is so important to get the word out. Thanks to some wonderful moms I've met so far I've been able to begin to freely talk about my experience, and Charlis, to help spread the word. So here begins my blog, our story. Thanks for visiting my blog and taking the time to read about my little girl. The little fighter. My little monkey.