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Loooong post. Baby in hospital. Need help. UPDATE #17

post #1 of 26
Thread Starter 
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
post #2 of 26
no advice but wanted to send you A LOT of hugs
post #3 of 26
Big hugs to you and Aspen. It sounds like you are doing a great job advocating for your baby. Reading your post, it didn't sound like they have done an ECHOcardiogram (using an ultrasound to look at her heart). That would give you a better idea of whether or not there are any structural cardiac defects. My baby was quite hypotonic, so I don't have first-hand experience of what hypertonia looks like, but it does sound like Aspen was doing some unusual things early on. However, my neurotypical DD1 always liked to stand in our laps and seemed to always have good head control, but we weren't paying much attention.
Keep trusting and listening to your intuition.
post #4 of 26
post #5 of 26

Follow your gut, if you think there's something, then keep pushing.

I'd suggest trying the reflux meds, because silent reflux can cause stiffening and even some blueness. Read up on Sandifer's Syndrome, watch some videos even. See if it might be some of what she's doing. http://infantrefluxdisease.com/infan...s-syndrome.php

Push for an Echo, a specialized ultrasound of the heart.

Also for your own peace of mind (and for her safety) ask for a home monitoring system, a portable pulse ox maybe, so you can respond to any more episodes she may have.
post #6 of 26
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.
Strangely enough, he was just now diagnosed as being mildly HYPOtonic. Not sure how the heck that happens.
post #7 of 26
I'm sorry that I don't have any advice for you, but I wanted to give a big hug to you and your family. This has got to be a very trying time for you and I hope things get sorted out ASAP.

PS "Aspen" is a beautiful name for, I'm sure, a beautiful little girl!
post #8 of 26
I do think this could be reflux related (we had severe reflux here). Zantac won't fix it long if it all if it is reflux (marci kids site has lots of good information about that).

Push hard for a heart echo. I'm shocked they didn't do that just given the blue skin.

They never saw a seizure on EEG but she appeared to be having seizures yet they decided they might be reflux--is that correct? Or is she definitely having seizures?

Did she have a newborn metabolic screening and if so was it expanded. If not she needs an expanded newborn metabolic screen now imo. They haven't ruled out everything if they haven't done that.

My typically developing kid could roll from birth (and "stand" on his legs with us holding his arms of course), great head control and all. He also would hold his arms together and cross his hands from the beginning almost which is not typical in my understanding. There is a range of muscle tone. He's on the high end of normal tone. His brain is fine (he actually had a CT for another reason) and he's been on target developmentally. I had a PT once tell me sometimes kids who are somewhat low tone over-compensate and appear high tone or stiff. That may be the case with my son and your baby too. Anyway, it meant nothing for him.

Mostly to you. What a rough way to start for both of you.
post #9 of 26
Originally Posted by 2boyzmama View Post

Follow your gut, if you think there's something, then keep pushing.

I'd suggest trying the reflux meds, because silent reflux can cause stiffening and even some blueness. Read up on Sandifer's Syndrome, watch some videos even. See if it might be some of what she's doing. http://infantrefluxdisease.com/infan...s-syndrome.php

Push for an Echo, a specialized ultrasound of the heart.

Also for your own peace of mind (and for her safety) ask for a home monitoring system, a portable pulse ox maybe, so you can respond to any more episodes she may have.
Yes, I was thinking all of this.

Many s to you mama.
post #10 of 26
Originally Posted by nudhistbudhist View Post
They now tell me its normal for babies to be blue around the mouth and on the forehead and nailbeds (which she was).
Ummm...no. What have her sats been like?

It all certainly COULD be reflux. I've never really heard of a happy refluxer, but I'm no expert. Have they offered any testing? A pH study is not an easy test, but it might be something to consider with such serious symptoms and no answers.

I took care of a hypertonic baby a few years ago. He was hard to hold because his body didn't melt into you like babies usually do, IYKWIM. He was stiff even in his sleep in his trunk and limbs. I don't know how to describe it better than that.
post #11 of 26
I'm still stuck on her getting 15 sticks before they thought to try her scalp!! I just went through IV sticks yesterday for my 2 yr old cousin whose mama is out of the country for 3 wks. They tried his hand, his foot, then his scalp. 3 sticks! I'm appalled that your baby had to go through 15!!!

I know this has got to be freaking you out. We have A LOT of good mamas on here who know more about Hypertonia. I hope you can get some good info.
post #12 of 26
One of my twins was hypertonic. It was d/t reflux.

Ask for a pH probe study. It will give you some more definitive answers--my twins (preemies) were largely silent refluxers--not a lot of spitting up or crying, but they had apnea/bradycardia from it.
post #13 of 26
I was in the same DDC, so sorry you're going through all this.
I'm a first time mom - so not much experience here but my 8 week old DS occasionally turns blue around his mouth especially when he's crying. It's happening less and less though and was more noticeable when he was just born. He also "stands" and holds his head really well already. He is a spitter, but apart from that he appears happy and not anything out of the ordinary.
Fingers crossed that you have an answer soon and she gets better.
post #14 of 26
Yes, what you are describing is exactly how many of us would describe hypertonia--my oldest had mixed tone as a baby (hyper and hypotonic). My mom caught it--she said he should feel "kinda floppy" and "babyish"--instead you could stand him up when he was tiny and not get him to bend at the waist to sit easily. And he was a happy preemie baby (for a preemie w/reflux and sensory issues!). Wearing her in a sling is one of the best things you can do for her at this age and stage (recommended by ALL the PT's that saw ds1 and ds2!)

As for the other--first thing I thought was heart problem and they are missing it!!! Doesn't anyone do echos or sonograms of the heart there? I don't think you mentioned that...Anyone can space out if they aren't getting enough oxygen! Also, seizure disorders can be triggered by stress....and low oxygen levels are certainly stressful! My mil is the one who caught the heart issues of one of her babies, and the docs missed it totally. Being faintly blue (like a very light tinge) can be normal for brand new babies as they adjust...but if you add blue finger and toe nail beds...lethargy....trouble feeding..uh, not normal!! And fwiw, there is a huge difference b/t that newborn bluish tinge and actually blue around the lips--I've seen it w/ds1 who had apnea of prematurity and had many apnea episodes and was on a monitor.

Keep up the hard work, Mama! I'm so sorry this has happened to you and your baby daughter. Best wishes! You are on the right track--keep pushing!!!

post #15 of 26
Just checking in and wondering how Aspen is doing, thinking of you and sending you s
post #16 of 26
Wow, what a crazy story! You are doing an AMAZING job of being your babys advocate!

Im a heart mom so the first thing I thought was Echo too! Check the heart! Have a PED cardiologist do it.

I dont have any more answers, but I hope you get some real answers soon!!!
post #17 of 26
Thread Starter 
So more craziness, no answers yet.

They did another EEG, an MRI, and Echo, and more bloodwork and a urine stick. She has a red rash on her cheeks, with flaky skin, and peeling skin on her ears. Looks like a sunburn, except she hasnt been in the sun at all. Goes away after 1 day. Probably a reaction to the abx? All the scans/tests come back fine. They see no seizure activy, no heart problems. They plan surgery for the next day for the hernia. She fasts, they put her under for surgery, say they will call me when shes in recovery. They call me after about 45 mins, because they went in with the scope AND THERE WAS NO HERNIA!!!!! so wtf did they see on the xray, and why is she being operated on????!!!! OMG!!!!! seriously I thought I was having a nightmare. So she has no heart problems, no hernia, no seizures, no nothing. So what DOES she have?

Blue around the mouth, a blue triangle on her forehead, blue under her eyes, bluebetween her eyes. When she's resting, playing, sitting, standing, eating, and when she cries it gets really blue. THey are all telling me now not to worry about the blue, it has nothing to do with when she stopped breathing, even though the blue started the night before all this nightmare began. We are home again. They still never gave me a monitor, or oxygen for emergency, or infant cpr info. They just sent us on our way, confident that she had the "million dollar workup" as they kept telling me, and so nothing was wrong with her. They did send out more testing for metabolic disorders. So in my search online for every kind of baby problem under the sun, I came across some interesting things that they missed in their "million dollar workup" that have nothing to do in my opinion with her problems but interesting that they missed them. She has a y shaped butt crack, with a dimple at the top right, and asymetrical thigh creases. lol. possible spina bifida occulta, possible hip displasia, which from what I'm reading, can be hard to diagnose. I pointed out her feet to them multiple times but they thinks its "normal." She almost always has her foot flexed up with her toes spread and pointing up. Her feet are also bent in (like pigeon toeing) halfway along the foot bones, not just the toes. I mentioned it to the midwives too after she was born. They said it was probably fine. Her feet also seem larger than they should be... she never had tiny little baby feet. Maybe there is something to all of this? Maybe some chromosome thing? She has inherited my and my moms 5th finger clinadactyl, which is assoicated with 60 different diseases/diisorders/syndromes. On its own I would bat an eye, but with all these other things going on.... sigh. I'm tired.

I really dont think this is reflux. She has NO symptoms. and the kind of "seizures" she was possibly having was a staring spell where she is completely still. I had already looked into Sandifers, and didnt really see anythingg that rang any bells with me.

We are still waiting on the metabolic tests. Oh, and we are testing for C diff because she started having bloody mucousy diarhea. We started her on probiotics mixed with a little pedialite (no flames please, my BM supply was LOW LOW LOW from all the stress so mixing with expressed milk was not an option, at least DH found the sugar/flavour free stuff). They actually released her from the hospital dehydrated. I couldnt believe it! I showed them, but all they said was "she's had an IV saline drip for almost 24 hours, she should be fine." Hmmm, she had two fasts in two days, has PUTRID smelling diarrhea, a sunken fontanelle, and a mum with low supply, but she's "fine?" Grrrrr.

I started taking my borage oil again. Woke up in a puddle of milk Yay! She is no longer dehydrated, but it took almost a week to get her that way.

Long rant sorry. Thank you for all your help and support. I dont really know what steps to take at this point. Any ideas????
post #18 of 26
Wow - I just saw this and couldn't not respond (even though I'll be of no help). I am so sorry you are going through all this - it sounds like a nightmare.

So, she's blue, but her oxygen levels are ok? I have no idea - but I hope you can find answers soon.
post #19 of 26
I couldn't read this and not reply. I have no advice since I've not been in your shoes. *****giant hugs to you, mama*****

I'm a very very firm believer in a mothers' intuition when it comes to her little ones. No one can possibly be as connected to someone any stronger than a mama is to her child (except for maybe conjoined twins). If mama really feels that something is wrong, there usually is, even if it's something very minor.
Hang in there
post #20 of 26
I second the above post. It defintely sounds like something is going on - please don't give up. Can you get a second opinion somewhere? It is surprising how cavalier they are being
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