Can someone help me? I want to know what a hypertonic infant realistically looks like. We are in the hospital right now. DD is 7 weeks. She went blue around the mouth (i thought I was imagining it, DH couldnt see it), the following day at her "baby shower" my gf thought she looked blue. I hadnt told anyone that I thought she looked blue the night before. I called my midwife right then and told her DD looked blue, ad just then she stopped breathing and went limp. It took a full minute of rubbing and pinching to get her to breath again. I was freaking out to much to even THINK of CPR (will be taking a course ASAP).
went to the ER, she had another "episode" there, mainting her blue color around the mouth. They thought she had a seizure too while we were there. Fixed gaze, no respose for about 15 seconds. Given ABX for possible infection. Chest XRAY showed nothing. They tried to get an IV in but couldnt do it. After 3 attempts I asked them to stop. They didnthave anything they wanted to give her anyways. Transfered by ambulance to hospital two hours away. More failed attempts at IV. Urine culture, blood culture, spinal tap, stool culture taken. More "seizures," 5 in one hour. More attempts at IV. Blew her veins everytime. the 15th attempt in her scalp. I gave them one more chance or I wanted a transfer to Childrens Hospital. They couldnt get it in. We Medevac in a jet to Vancouver. The IV team got it in first time! GRRRR but YAY! Took them 20 mins of careul exam to find a vein that wasnt blown. GRRRR again! Waited for the results of the tests to come in. Everything was negative. More "seizure" events. EEG, ECG, brain ultrasound fine. Sleep study showed mild bradycardia and mild apnea. Her color returned to normal on the third day. Discharged on the fourth day with the DX of reflux. Ummmmm ok? Didnt agree. They tried to give her Zantac but I didnt want to without at least ONE symptom of reflux.
Her color was good for a whole day out of hospital. I stayed at my inlaws place. Home is now 5 hours drive away. Getting ready to drive home. DD starts looking blue around the mouth again. Called the nurses line. They said to call 911. Back in the ER. Ped sees her have a "seizure." No fever. Transfers us by ambulance back to Childrens hospital in Vancouver. They dont really want us back because they told the ped "We already did all the testing. We dont know whats wrong." I tell the ER doc in Vancouver that I think she has a heart problem even though the ECG was ok. Something is wrong. We felt it since birth. She is sooooo sleepy. She stares into space. She sleeps like she isnt breathing. We all poke her to make sure she is still alive. Before she ever turned blue. Just a feeling we had.
They now tell me its normal for babies to be blue around the mouth and on the forehead and nailbeds (which she was). They say they will redo the XRAy to make me feel better, and a longer EEG since she didnt have any episodes during the last one. I want an MRI. They say no, not unless the EEg comes back funny. Chest XRAY comes back. SHE HAS A DIAPHRAGMATAL HERNIA. Not huge but big enough. Luckily its central. They want to operate but have to wait because they dont know IF she is having seizures, or whats causing them. They also dont know if she has a heart condition, which they are saying can accompany a diaphragmatal hernia. She's still blue around the mouth.
The neurologists come and do some reflex tests. As they are testing they are telling me how they will do an EEG and then if it looks weird they will do scan. Then they are lifting her off the bed by her hands. They are looking at each other. Repeating the test, looking at eachother. Said they will do a scan. I asked them why. They said she looks hypertonic. They leave. The ped comes in later. She tells me that things I was saying was setting off alarm bells now. She's been able to roll from her back to her stomach since birth. She likes to stand holding my hands. She has excellent head/neck strength. she can lift her head off the floor and look around when on her tummy. Since birth. They tell me that is not normal. That that may be hypertonia. Are they right? Isnt it possible that she is just strong? I carry her in a sling fairly frequently, stand her up on my lap everyday. Maybe she is just strong. But sometimes I cant bend her to sit her back down. I thought she just liked to stand. Shes a happy baby. Hardly ever cries. Not even when she wakes up. Just grunts and waves her arms till I pick her up 
Any insight on anything is appreciated. We will be doing an EEG today (its midnight here) and an MRI soon. I really dont know what to think except I KNEW SOMETHING WAS WRONG. I hope they can help my baby girl. Her name is Aspen. I'm soooo tired
went to the ER, she had another "episode" there, mainting her blue color around the mouth. They thought she had a seizure too while we were there. Fixed gaze, no respose for about 15 seconds. Given ABX for possible infection. Chest XRAY showed nothing. They tried to get an IV in but couldnt do it. After 3 attempts I asked them to stop. They didnthave anything they wanted to give her anyways. Transfered by ambulance to hospital two hours away. More failed attempts at IV. Urine culture, blood culture, spinal tap, stool culture taken. More "seizures," 5 in one hour. More attempts at IV. Blew her veins everytime. the 15th attempt in her scalp. I gave them one more chance or I wanted a transfer to Childrens Hospital. They couldnt get it in. We Medevac in a jet to Vancouver. The IV team got it in first time! GRRRR but YAY! Took them 20 mins of careul exam to find a vein that wasnt blown. GRRRR again! Waited for the results of the tests to come in. Everything was negative. More "seizure" events. EEG, ECG, brain ultrasound fine. Sleep study showed mild bradycardia and mild apnea. Her color returned to normal on the third day. Discharged on the fourth day with the DX of reflux. Ummmmm ok? Didnt agree. They tried to give her Zantac but I didnt want to without at least ONE symptom of reflux.
Her color was good for a whole day out of hospital. I stayed at my inlaws place. Home is now 5 hours drive away. Getting ready to drive home. DD starts looking blue around the mouth again. Called the nurses line. They said to call 911. Back in the ER. Ped sees her have a "seizure." No fever. Transfers us by ambulance back to Childrens hospital in Vancouver. They dont really want us back because they told the ped "We already did all the testing. We dont know whats wrong." I tell the ER doc in Vancouver that I think she has a heart problem even though the ECG was ok. Something is wrong. We felt it since birth. She is sooooo sleepy. She stares into space. She sleeps like she isnt breathing. We all poke her to make sure she is still alive. Before she ever turned blue. Just a feeling we had.
They now tell me its normal for babies to be blue around the mouth and on the forehead and nailbeds (which she was). They say they will redo the XRAy to make me feel better, and a longer EEG since she didnt have any episodes during the last one. I want an MRI. They say no, not unless the EEg comes back funny. Chest XRAY comes back. SHE HAS A DIAPHRAGMATAL HERNIA. Not huge but big enough. Luckily its central. They want to operate but have to wait because they dont know IF she is having seizures, or whats causing them. They also dont know if she has a heart condition, which they are saying can accompany a diaphragmatal hernia. She's still blue around the mouth.
The neurologists come and do some reflex tests. As they are testing they are telling me how they will do an EEG and then if it looks weird they will do scan. Then they are lifting her off the bed by her hands. They are looking at each other. Repeating the test, looking at eachother. Said they will do a scan. I asked them why. They said she looks hypertonic. They leave. The ped comes in later. She tells me that things I was saying was setting off alarm bells now. She's been able to roll from her back to her stomach since birth. She likes to stand holding my hands. She has excellent head/neck strength. she can lift her head off the floor and look around when on her tummy. Since birth. They tell me that is not normal. That that may be hypertonia. Are they right? Isnt it possible that she is just strong? I carry her in a sling fairly frequently, stand her up on my lap everyday. Maybe she is just strong. But sometimes I cant bend her to sit her back down. I thought she just liked to stand. Shes a happy baby. Hardly ever cries. Not even when she wakes up. Just grunts and waves her arms till I pick her up Any insight on anything is appreciated. We will be doing an EEG today (its midnight here) and an MRI soon. I really dont know what to think except I KNEW SOMETHING WAS WRONG. I hope they can help my baby girl. Her name is Aspen. I'm soooo tired
I hope they are able to figure out what is going on. Hopefully it isn't serious. My Aidan was mildly hypertonic. Mainly he was stuff in the legs and difficult to bend to get him to sit in my lap vs standing in my lap, took him a while to sit as well b/c of it.
