A TAIL of strength, will, love, HOPE, and MIRACLES
Saturday, May 26, 2012
well, survived another anniversary. Yesterday and this morning were definitely rough and things were not looking good, but after a good several laughs with Joyce and an outing with my mom I'm feeling better. Happier. Thankful. I'm glad the overwhelming anxiety has ceased for the moment (to rear it's head in a few days I'm sure) but for now I'm just grateful. Grateful for the gifted team of physicians, nurses, NPs, PAs and everyone else who worked with us in Detroit. Blythe, the music therapist. Freddy the front desk guy. BIGBYS of course. Subway Pizzas (which I lived on in Detroit for that month) The shunt as much as I hate it, it saved her. And it was very closing to going the other way. Every minute I've had with Charli, that we have all had with Charli since 5-26-10 has been miraculous. Her strength has never been more evident than this last year while in and out of the hospital God knows how many times, 4 shunt revisions, starting full day 5 day a week pre school and still continually making progress.Yes she has missed a lot of days due to drs appointments, her being tired, sick whatever, but she STILL continues to make gains. NONE of this would be possible if we had not had the surgery. I can't even let myself think about the possibilities if we HADN'T had the surgery. Sub clinically seizing every 2 seconds. That is essentially status. Who knows how long she had been seizing like that. Transition into LGS would have been completed. Charli was rare, she made progress (albeit slowly) despite the frequency of seizures. Dr. Chugani was very surprised. But who knows how long she could have kept going at that pace. There were no more meds to try, no other options. She was a clear surgical candidate. It was what we needed to do and we had to be in Detroit. Sometimes the amount of trauma this family has suffered overall escapes me. But as I looked back thru the pictures, the montage, it is so real I feel raw. Her birth, and the hell that ensued after, her seizing the day after Christmas, the IS diagnosis, her father having a spontaneous carotid artery dissection and stroke when she was 6 months old, the agonizing months and months of seizure meds, changes, force feeding her meds, food aversion, the hellish 20 some odd hours spent in the ER when we thought she was having an aortic dissection and we couldn't get any peds anesthesia to come in and do the tests she needed to rule it out, and we had no idea if she would live thru the night, traveling all over New England for drs and tests. steroids, the decision to go on Vigabatrin and risk the vision loss to get rid of the seizures. Hoping that would be our miracle drug. The disappointment when it wasn't. The thought and amount of process and time going in to the surgery decision. And then going to Detroit. Where it just all made sense. I wish I had gone there about a year earlier. It just all clicked. It was right. Everything they said, how she would be, why she was seizing, it all made sense. Going thru the surgery was pure hell. Nothing short of it. The hemi was bad, but no where near as bad as the shunt. that was the most agony I've ever been in. Not knowing, anything. would she live? Did she have a stroke? is the clot going to break and cause a stroke? will she be the same? Could she survive the surgery only to have another possibly fatal stroke from the clot in her transverse sagittal sinus? But that pressure change was another miracle. Brought my girl right back to me. Smiles and all (after 12 hours of her sleeping off anesthesia) I had never been more happy in my life. We were going to do intensive in pt PT there, but after the shunt it was clear she needed time to just rest and go home. and that's what we did. shortly after being home for a week or two I get a call I have stage 2 superficial spreading melanoma. Not what I was expecting to hear. And a few months later my mom was diagnosed with it as well. And I don't know all the details , but I believe Charli's other grandma Kitty had thyroid surgery because of a malignancy. For some reason it seems we just can't catch a break. But I'll tell you this. Nobody loves this girl more than me, but it's a close second with her dad, and then our families and friends. Larry and I would die for her if it meant she would be ok. And she is lucky to have grandparents and cousins who love her , and friends who think of her always and send good thoughts and love. We are lucky. Larry and I are lucky, because we have the most amazing daughter, a beautiful girl with a big heart, strength that blows me away, and love and smiles to share with everyone. I know she teaches me things daily. Her persistence and will is so unbelievably strong. I knew from the first day in NICU I had a fighter. She has had to fight for so much, and thru so much, but she always does it with a smile (and some complaints sometimes) but always smiles. And big bright appreciative eyes. I've never been more proud in my life. She is my hero. She always surprises me, impresses me, makes me laugh. We have the most amazing daughter. We've all been thru hell. Most recently Larry just underwent surgery to repair an inguinal hernia. sometimes it feels as if its neverendless. But we got thru it all, and we will get thru it all again if need be. Because that little girl, I'll do whatever I need to, and her dad will to. The one thing ALL of us can agree on is Charli, and she deserves to have the best. I love you Gooch. I'm glad you had a good day at Daddys tonight. I miss you. I love you more than anything <3
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.