Olivia has been diagnosed with Speech Apraxia, and while I still don't completely understand all the nuances of it yet or how it will affect her long term, the short of it is that she can understand language better than she can speak it. She will often look at you quite intently and seriously while you are speaking, watching your mouth move and sometimes silently moving her lips.
It's interesting watching the process of language develop in such slow motion. Everything about Olivia develops in slow motion and it's quite fascinating in some ways to see how intricately we are made and how each step of our development prepares us for the next task along the way. She's recently begun saying sentences that have meaning only to her at this point. They are short and to the point and often sound very specific but we can't decipher them. She loves to sing and will sing anytime she hears anyone else doing it. She can actually sing more easily than she can speak, and her ST says that is typical of apraxia (similar to stutterers). Still no words to the songs, but she can mimic rhythms pretty well (for her, that is).
Recently her ST handed me a piece of paper with all the words Olivia has said up to this point. There are quite a few more than I thought would be on there; I think 37 words or gestures is what Janet (her ST) told me. It was both refreshing and sad to see the paper... more words than I thought, but so many of them said only once or twice. I haven't heard a clear "mama" since last November.
Our next goal is for her to say 2 and 3 words together. Since I've been given the piece of paper to tape up and write on, I've found myself listening closer to her babble, as has Rafe and Amelia. It's only been 1 day, literally, and we've written down 3 things. This morning she went to wake up Amelia right after Rafe did, and she made a kissing sound and said "a(k)e uh" (wake up) as she touched Mia. At the store today she grabbed a plantain and said, "Ooo! Uh(k) aa aaa(d)" (look at that). Those are things we count as speech, surprisingly enough. Janet keeps reminding us that speech is communication and although we can't recognize it, she is speaking and forming sentences. Her favorite thing to say is "If you think you heard it in context, you did!"
Showing posts with label Livvie. Show all posts
Showing posts with label Livvie. Show all posts
Thursday, September 22, 2011
Friday, September 11, 2009
Olivia's story - part 1
Warning: If you have kids, you should read this post for appropriateness before letting them read it. Also, if it seems like an annoying amount of detail, please forgive me. This post is as much for myself and Rafe as it is for everyone else.
My belly seemed to grow quickly the weeks before I had Olivia. My belly was as large as it was when I had Amelia, and I still had over 2 months left before she was due (October 22). Rafe and I kept joking about going into labor; I was exhausted and had really bad back pain all week. I kept telling him I was probably going to have back labor if this was how bad I felt at 7 months pregnant. I couldn't bend over to tie my shoes, I could barely get dressed and I had a woman gently poke me in the belly one week before she was born to tell me that I looked like I was about to pop.
The Sunday she was born (has it already been 3 weeks this Sunday?!?!), I went to church feeling back pains and cramping. I had been feeling exhausted all week - only able to do about three hours of real work each day without lying down. After church, I was too tired to do anything but take a nap after lunch and so I slept till around 4. I was still cramping lightly, but after going to the hospital twice before that month and being dismissed by the staff with sheets of paper that they highlighted with reasons to come back (cramps weren't highlighted), I felt silly calling the doctor. Every time I had mentioned pain or other issues, they were explained away. Now I wish I had taken them a little less seriously and myself a little more.
We'd promised to take Amelia swimming that Sunday, so while Rafe was getting her ready to go after my nap I went to the bathroom before leaving - only to wipe away two tissues of my mucous plug. Immediately our plans changed and we scrambled to find someone to watch Amelia as we headed to the hospital. Unfortunately, no one was available and Amelia was crying hysterically - scared about the suddenness of change in plans and mommy and daddy rushing to the hospital. We had to throw her into the car screaming, but luckily by the time we made it to the hospital she was quiet again.
Once at the hospital, I was rushed to the Antepartum in a wheelchair - only to find no one there. We went to the nurses desk and had to get a nurses attention (the only one there apparently, and it was her dinner break since she had her back to us eating) in order to be seen. After that, no one seemed in a hurry for anything. I was on a monitor for two hours with Rafe trying to keep Amelia entertained in the chair.... she was remarkably well behaved, quiet and obedient.
As a military family, the government supplies our health care. (Anyone who wants the government to run their health care should ask a military family how managed care is working for them when they need anything out of the ordinary). So even though we went to a civilian hospital, my doctor that evening was a military doctor on call. He never came in the first time, and never ordered a vaginal check or an ultrasound. I have no idea what the nurse conveyed to the doctor, so I have no idea where the system broke down - whether she failed to communicate everything to him or if he failed to diagnose properly. During those two hours, my "cramps" registered as "irritations" on the monitor, according to the nurse. I told her my belly had been going numb for two weeks and that I couldn't feel my baby move in the middle of my belly and only felt slight movements along the outer edges. She didn't seem concerned and apparently neither was my doctor. She did mention that if I had any more mucous incidents to show her.
During this time, I mentioned several times about my belly being numb and not being able to feel the baby move. She pointed out the sounds on the monitor as baby movements, but each time she pointed out the sounds, I felt nothing and told her that. There was no explanation as to why that was or even a mention that it was out of the ordinary.
After about two hours, I was told that nothing was wrong and I could leave. All my concerns were explained away - cramping was probably gas or needing to defecate; I was probably dehydrated, the bloody mucous was probably from intercourse. I still felt uneasy; I mentioned that I was diligent in drinking water, eating fiber, having prunes with meals, wasn't stopped up (although it felt like it), and ok, cervix can sometimes get bloody with intercourse but THAT bloody? And what was the mucous about? She told me it was semen, but it wasn't even possible and I told her that. I was too uncomfortable physically to finish an intimate encounter the night before. But each symptom was systematically checked off the list and explained away; and once again I felt silly for going to the hospital concerned about this baby. I went to the bathroom again and wiped away more bloody mucous and showed it to her. She said it didn't seem to be anything to be concerned about.
Right before leaving, as she was once again at a desk eating with her back to me (only this time it was in the antepartum room and there was another nurse there next to her), I asked a question - If I was fine, then what were the cramps all about? I told her that when I had stood up to go to the bathroom (and mentioned that once there, I couldn't go at all and just felt pressure), I had a very strong cramp, like a really really horrible period cramp right before going in. She said she didn't really know but to go home and call back if they became worse. During my visit, she was also monitoring another woman who had come in twice for false labor and told me that sometimes that just happens - I had a feeling that she thought my body was sending me false signals also.
However... a simple vaginal check or ultrasound at that point would have made all the difference in the world to the health of my sweet Olivia Grace. They would have discovered that I was already in labor and I would have had enough time to get to MUSC or at least have a steroid shot or drugs to slow labor down. It was getting late, and we needed to get Amelia back home and into bed. I was stressed out and wanted to trust that the medical professionals knew what they were talking about so I didn't press the issue.
My belly seemed to grow quickly the weeks before I had Olivia. My belly was as large as it was when I had Amelia, and I still had over 2 months left before she was due (October 22). Rafe and I kept joking about going into labor; I was exhausted and had really bad back pain all week. I kept telling him I was probably going to have back labor if this was how bad I felt at 7 months pregnant. I couldn't bend over to tie my shoes, I could barely get dressed and I had a woman gently poke me in the belly one week before she was born to tell me that I looked like I was about to pop.
The Sunday she was born (has it already been 3 weeks this Sunday?!?!), I went to church feeling back pains and cramping. I had been feeling exhausted all week - only able to do about three hours of real work each day without lying down. After church, I was too tired to do anything but take a nap after lunch and so I slept till around 4. I was still cramping lightly, but after going to the hospital twice before that month and being dismissed by the staff with sheets of paper that they highlighted with reasons to come back (cramps weren't highlighted), I felt silly calling the doctor. Every time I had mentioned pain or other issues, they were explained away. Now I wish I had taken them a little less seriously and myself a little more.
We'd promised to take Amelia swimming that Sunday, so while Rafe was getting her ready to go after my nap I went to the bathroom before leaving - only to wipe away two tissues of my mucous plug. Immediately our plans changed and we scrambled to find someone to watch Amelia as we headed to the hospital. Unfortunately, no one was available and Amelia was crying hysterically - scared about the suddenness of change in plans and mommy and daddy rushing to the hospital. We had to throw her into the car screaming, but luckily by the time we made it to the hospital she was quiet again.
Once at the hospital, I was rushed to the Antepartum in a wheelchair - only to find no one there. We went to the nurses desk and had to get a nurses attention (the only one there apparently, and it was her dinner break since she had her back to us eating) in order to be seen. After that, no one seemed in a hurry for anything. I was on a monitor for two hours with Rafe trying to keep Amelia entertained in the chair.... she was remarkably well behaved, quiet and obedient.
As a military family, the government supplies our health care. (Anyone who wants the government to run their health care should ask a military family how managed care is working for them when they need anything out of the ordinary). So even though we went to a civilian hospital, my doctor that evening was a military doctor on call. He never came in the first time, and never ordered a vaginal check or an ultrasound. I have no idea what the nurse conveyed to the doctor, so I have no idea where the system broke down - whether she failed to communicate everything to him or if he failed to diagnose properly. During those two hours, my "cramps" registered as "irritations" on the monitor, according to the nurse. I told her my belly had been going numb for two weeks and that I couldn't feel my baby move in the middle of my belly and only felt slight movements along the outer edges. She didn't seem concerned and apparently neither was my doctor. She did mention that if I had any more mucous incidents to show her.
During this time, I mentioned several times about my belly being numb and not being able to feel the baby move. She pointed out the sounds on the monitor as baby movements, but each time she pointed out the sounds, I felt nothing and told her that. There was no explanation as to why that was or even a mention that it was out of the ordinary.
After about two hours, I was told that nothing was wrong and I could leave. All my concerns were explained away - cramping was probably gas or needing to defecate; I was probably dehydrated, the bloody mucous was probably from intercourse. I still felt uneasy; I mentioned that I was diligent in drinking water, eating fiber, having prunes with meals, wasn't stopped up (although it felt like it), and ok, cervix can sometimes get bloody with intercourse but THAT bloody? And what was the mucous about? She told me it was semen, but it wasn't even possible and I told her that. I was too uncomfortable physically to finish an intimate encounter the night before. But each symptom was systematically checked off the list and explained away; and once again I felt silly for going to the hospital concerned about this baby. I went to the bathroom again and wiped away more bloody mucous and showed it to her. She said it didn't seem to be anything to be concerned about.
Right before leaving, as she was once again at a desk eating with her back to me (only this time it was in the antepartum room and there was another nurse there next to her), I asked a question - If I was fine, then what were the cramps all about? I told her that when I had stood up to go to the bathroom (and mentioned that once there, I couldn't go at all and just felt pressure), I had a very strong cramp, like a really really horrible period cramp right before going in. She said she didn't really know but to go home and call back if they became worse. During my visit, she was also monitoring another woman who had come in twice for false labor and told me that sometimes that just happens - I had a feeling that she thought my body was sending me false signals also.
However... a simple vaginal check or ultrasound at that point would have made all the difference in the world to the health of my sweet Olivia Grace. They would have discovered that I was already in labor and I would have had enough time to get to MUSC or at least have a steroid shot or drugs to slow labor down. It was getting late, and we needed to get Amelia back home and into bed. I was stressed out and wanted to trust that the medical professionals knew what they were talking about so I didn't press the issue.
"Now would be a good time to pray..."
When you've just suddenly given birth to a baby at 31 weeks, watched her whisked out of the room in seconds after being born and then not seen or heard ANYONE or ANYTHING else in your room for over an hour except the whirr of a helicopter landing on the roof of the hospital, those words are not the first words you want to hear.
You especially don't want to hear them from your husband, who tells you they were the first words he heard when he left the room to ask a nurse what was going on with our baby.
It's taken me a while to write this post. Every time I start to sit down and explain every thing that happened the night Olivia was born, I just feel so much anger and sadness at all the tiny mishaps along the way that added up to an extremely dangerous situation for our little baby. I don't know if I can write this coherently in any semblance of order, but I will try. What happened that day and the days that followed came so very quickly that we have had little time to talk to the people we love, our family and friends and neighbors, and tell them all that transpired. They happened so quickly that the experience seemed surreal and we were left spinning like toy tops on the sidewalk. I may not be able to write this all at one time. This post and the ones that follow are as much for us as it is for you.
You especially don't want to hear them from your husband, who tells you they were the first words he heard when he left the room to ask a nurse what was going on with our baby.
It's taken me a while to write this post. Every time I start to sit down and explain every thing that happened the night Olivia was born, I just feel so much anger and sadness at all the tiny mishaps along the way that added up to an extremely dangerous situation for our little baby. I don't know if I can write this coherently in any semblance of order, but I will try. What happened that day and the days that followed came so very quickly that we have had little time to talk to the people we love, our family and friends and neighbors, and tell them all that transpired. They happened so quickly that the experience seemed surreal and we were left spinning like toy tops on the sidewalk. I may not be able to write this all at one time. This post and the ones that follow are as much for us as it is for you.
"Now would be a good time to pray..."
Saturday, September 5, 2009
Emergency Surgery
Today Olivia needed surgery on short notice for "nec" - necrotizing colitis. She had 3 surgeons working on her and the surgery went far faster than they anticipated going in - about half an hour less. She had a perforation that wasn't seen on the xrays; but luckily they caught it in the early stages. She has 2 colostomys and will have them for about 2 months and then more surgery to connect them again. She's recovering well - as they told us, she is a very sick little baby but doing well considering the circumstances. She will get a bit worse over the next 48 hours as her body fights to heal itself after the "controlled trauma event", but then much better after that.
We are extremely lucky to be at MUSC in Charleston. It's one of the top ten NNICU hospitals in the country and she could not be in better hands. Livvie is a bit high maintenance, so tonight she has her own nurse all to herself. Surgeons and nurse practitioners and nurses are checking on her constantly and we are grateful, very grateful to them.
It's after midnight - I think we'll try to get some sleep.
We are extremely lucky to be at MUSC in Charleston. It's one of the top ten NNICU hospitals in the country and she could not be in better hands. Livvie is a bit high maintenance, so tonight she has her own nurse all to herself. Surgeons and nurse practitioners and nurses are checking on her constantly and we are grateful, very grateful to them.
It's after midnight - I think we'll try to get some sleep.
Friday, September 4, 2009
Update
When I last posted, Olivia had been steadily doing better and we had started to breathe a sigh of relief. She was taken off the ventilator and the jet, medications were being dialed back and stopped and she kept looking better and better.
Soon after that at the beginning of this week, she began having some roadblocks to her progress. She's had seizures and was put back on a ventilator. She has continued to get slowly worse again and developed necrotizing colitis yesterday (not sure on the spelling). Her intestines are not processing any of the breast milk and a surgeon has looked at her. Please pray for our sweet little baby - she is just really struggling right now.
Soon after that at the beginning of this week, she began having some roadblocks to her progress. She's had seizures and was put back on a ventilator. She has continued to get slowly worse again and developed necrotizing colitis yesterday (not sure on the spelling). Her intestines are not processing any of the breast milk and a surgeon has looked at her. Please pray for our sweet little baby - she is just really struggling right now.
Friday, August 28, 2009
Welcome to the World, Olivia Grace!
She zipped into the world after MAYBE 5 minutes of pushing at 10:28, Sunday August 23rd, weighing 3 lbs and 2 oz; 17 inches long and was born at 31 1/2 weeks old.
We have a lot to share about her birth story, both horrendous and miraculous. But for now, we want to thank everyone SO MUCH for all the support and prayers. We just took a deep breath today, coming up for air for the first time in 5 days. I didn't even know it was going to be Friday until last night when Rafe told me.Olivia looks 100% better then she did when the life flight crew wheeled her away Sunday night. She was flat, yellow, and bruised and completely limp. We have a picture the crew gave us right before they took off and it is shocking in it's intensity. If we have time tomorrow or the next day, we will begin to update with more details.
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