Here is an update on Olivia in my daughter's own words. I still am hoping for the best outcome!
First of all, let me start with saying Olivia is doing great.
Olivia had her follow-up Neurology appointment and her follow-up Neonatology appointment yesterday.
We were told some things that we pretty much already knew. Olivia needs intervention with a physical therapist. She has low muscle tone and gross motor delay. The doctor told us it is crucial for Olivia to begin Early Intervention, as soon as possible. Luckily, I have already started that process. Apparently, they said she has "Hypotonia", which is pretty much just low muscle tone.
The doctor said she is not where she needs to be, with her age, as far as muscle tone is concerned. Of course, it doesn't help that Olivia was pretty much lying down for close to the first 6 weeks of her life.
The doctor also kept talking about how "her brain took a huge hit". That confused me a little, because, where we knew her brain had some injury, we were never let to believe it "took a huge hit". I decided to wait an hour, and direct my questions at her neurology visit.
Olivia's Noonan's test came back, and it was negative. Her other genetics screenings, that were "supposedly" sent out close to 8 weeks ago, are no where to be found. When the nurse called to get those results, she was told they have no record that they were ever sent.
I brought to the doctor's attention that Olivia often snores. She said she suspects that is due to her low muscle tone, that she also has low muscle tone in her chest. She told me to watch the "gasps of breath" that Olivia sometimes has as well, and she suggested for Olivia to have a sleep study done. This would be an overnight study, at the hospital.
Two more "diagnoses" that we were given, that I didn't know about, are "SVT" (Supraventricular Tachycardia) and "HIE" (Hypoxic-ischemic encephalopathy). I can not explain those. Google them. lol
The good things the doctor said: Olivia was good at tracking objects, she had good social skills with people (eye contact, smiling), and they said she was pretty strong. It still confuses me that they say she is "strong" but has such poor muscle tone.
They also mentioned things with her head. You can feel ridges on her scalp. I can't really explain it well, but easy explanation, they will be monitoring her brain growth and development, by her head. She has a smaller sized head, and that is one way they find out about the brain development. She has these "ridges" that you can feel on the back of her head. Something about her bones overlapping....I don't know. I just know that her brain is of concern, and that they will be watching it.
The size of a baby's head, also lets doctors know about their brain development. Olivia's head is small, and in the 10th percentile. On the plus side, they have seen a pretty good increase in her head circumference since the day she was born. So she is growing!
Neurologist showed me a picture of her MRI, and I saw all of the tiny "bleeds" throughout her brain. She said there were focal areas of restricted diffusion in the bilateral frontal corona radiata, and questionable restricted diffusion in the right cerebral peduncle. I don't know exactly what that means, but she used the word "stroke". She said she couldn't be sure about that, without looking at a certain picture on the MRI, and of course, that picture would not load.
She also said that Olivia's EEG showed spikes, as I said in a post weeks past, which showed that Olivia is very prone to seizures. That is the reason why she has been on Phenobarbital, the anti-seizure medicine, and will continue to be on it for another couple months. The doctor also said that seizures in infants are very hard to diagnose, unless they have one while they are hooked up to a monitor. So she just gave me signs to watch out for, all of which we have not seen in Olivial. Those signs include, rhythmic shaking of one limb that cannot be suppressed by you touching her, or she will stop what she is doing and stare; if you can startle her out of this, it is not a seizure.
She also said that Olivia has a slightly increased risk for infantile spasms. These seizures are characterized by head drop, flexing of the belly and quick extension ofher arms over her head. These seizures are very brief. She said if we suspect any of those, to contact them.
She also noticed that Olivia's eyes quickly move from side to side. I too have noticed her doing that, often. It is so hard to notice, because the movement is so small and quick. She wants her to see a Neuro-opthamologist for it. It's called "nystagmus". So we added on another specialist to our daily/weekly/monthly doctor visits.
Neurologist said it is quite hard to tell just what damage the brain injury as caused, and how it will later affect Olivia. Whatever damage was caused, can not be repaired.
Again, they do not know what caused the severe brain injury. It could have been some sort of stress that Olivia had during delivery, but she does not believe it was due to oxygen deprivation.
We still don't know the reason for ALL of these problems Olivia had, and I fear we will never know. I can't help thinking, if they had taken her out, when I went into the hospital 5 days before I actually had her, would all of this have happened? I know I can't do that to myself, but it's still in my (our) mind.
Yesterdays visit was probably the most overwhelmed I have felt in weeks. I started thinking about her past to present, and hearing all of this just really got to me. We knew her brain had injury, but just hearing all of this made it seem like it was much worse then we had really ever known it to be.
Olivia acts, for the most part, like a normal, healthy baby. I have no doubt in my mind that she will continue to thrive like a healthy baby, and she will overcome her delays. I really don't believe, in my heart, that she will have severe, permanent complications with her brain. We will just continue working with her, making sure she gets everything she needs, both physically and developmentally.
We continue to try and get Olivia to qualify for her Synagus vaccination for RSV. The doctor's office finally was able to get her to qualify, but as it turns out, Josh's insurance require us to pay a co-pay of $450/shot. She needs 6 shots. I think we will be able to get it down to about $200-$250/shot, with assistance, but that is still a good chunk of change! The Neonatology doctor agrees that is ridiculous, but, unfortunately we have to bite the bullet on this one. This shot reduces Olivia's risk by 50%. And with her history, and continued risks for viruses, Olivia needs this shot. She should have had the first dose by now. Yet another way that all of your donations will be put to good use.
I am so fortunate to be able to be home with Olivia. I can't thank my employers enough for their HUGE help with making that possible. I don't know what we would have done, had I not been able to be home with her. Not only to help her grow and develop, but doctor visits! I have SO many to go to on a daily/weekly/monthly basis. We now have 5 specialists that are following Olivia at CHOP. That's a lot of back and forth visits!
Olivia is now 9lbs 8 oz, and is continuing to eat without the NG tube! She is growing marvelously, and is just the biggest joy to have around. All of the sleepless nights, exhausting doctor visits, overwhelming thoughts are worth it, by getting to kiss her hello in the mornings.
Being a "stay at home" mother (or father) is the most difficult full time job a person could have. You really don't understand all it entails until you, yourself experience it. Having a "sick" child OR healthy child. I now think all of you, who are or were, stay at home parents have the hardest job in the world, but also the most rewarding.
That's all for now. Lots to try and cram in, although Olivia is waking, and my hopes of getting multiple tasks around the house done, are now gone. :-)
Continued love to you all!
Stacy
