Edit: 9/1: Teagan had her follow up MRI on Monday, we got the amazing news on Friday that the lesion has remained stable!!! Next MRI in one year!!! Prayers worked❤️🙏

I am asking everyone to please pray as much and as hard as you can for my 13 month old daughter Teagan. She was rushed to the hospital yesterday morning after she woke up having a seizure. After having a CT and MRI we know she has a lesion on her brain. The lesion is on the left side of the brain and her seizure was localized to the right side of her face and her right arm. When she woke up she had a fever, so our first instinct was a seizure caused by a high rising temperature. This morning we were hopeful that the lesion had nothing to do with her seizure, but after meeting with an oncologist and neurologist, it is the lesion that is causing it. It is either a tumor or a cortical dysplasia. We won’t know much more until she meets with the neuro surgeon next month. As of now, Teagan is fully sedated and intubated. She aspirated Thursday morning during her seizure, so her right lung has some fluid in it that may be causing an infection. She had a round of antibiotics this afternoon. The respiration team attempted to lower the support from the machine to see if she would be able to come off, unfortunately because of the amount of fluid/infection she was struggling to breathe. We are super hopeful for today. Teagan’s mommy and daddy desperately want to hold her💕

Here are a few pictures that totally capture her amazing personality. We can’t wait until she is back to herself.

Update 6/22:

We just want to say from the bottom of our hearts “Thank You for all of your prayers!!!”

Unfortunately she didn’t have the best night last night, a lot of coughing and her struggling to breathe while only relying on a small amount of support from the vent. This morning labs came back showing she has pneumonia from aspirating during her seizure Thursday morning. She was put on an antibiotic immediately. The pneumonia would also explain the fevers that just won’t go away. Since she wasn’t able to successfully breathe on her own with very little assistance from the vent, they decided to basically “reset” her breathing parameters. After they gave her a paralytic and switched her sedation medications, they inflated her lungs. The idea behind this was that they wanted her lungs to be fully inflated and working at full capacity. After about an hour they lowered the settings in preparation for her to try another sprint on her own. Tonight’s sprint lasted about 2 hours before her tube was blocked by secretions that caused her to vitals to drop to the point they had to remove the vent from her tube and bag her. This entire incident started and ended so quickly that we didn’t have a chance to get emotional or upset. The staff here is absolutely amazing!!! Since then, she has been resting comfortably, but completely dependent on the vent again. Tonight’s goal is to get her breathing on her own with minimal support by morning so maybe by lunchtime she can come off of the vent completely. Hopefully this all makes some sense considering we are writing this quickly before we get a little sleep.

Update 6/23

Well looks like our girl is going to be a force to be reckoned with 💪🏻💪🏻💪🏻 Last night was fairly quite after her quick episode at shift change. The physician, nurses, and respiratory therapists followed the steps that needed to be done in order to remove the intubation tube. At shift change she had another short very quick episode, the staff were joking later that she just wants all of their attention. All of the sedation medication was turned off just before 9am in preparation to remove the tube a couple of hours later...well baby Teagan wasn’t in agreement with that plan. She was so active that they feared her knocking the tube out herself. At about 9:50 the tube was removed and she was placed on oxygen support through a face mask. As expected her breathing wasn’t where they want it to be since her lungs have become “lazy” due to the machine doing all of the work for the last 3 days. Her expected breaths should be 30-40 per minute, she came off of the vent at about 100 per minute. So of course we were prepared that if her blood gas tests showed her carbon dioxide levels were too high then she would have to be intubated again. The first blood gas test came back ok, the next one at 12pm came back borderline not good, all the while her breathing rate is still entirely too fast. At 3pm my in-laws came in to sit with her so we could step out for a little and eat. Dinner was basically us crying in between each bite as we prepared to come back and be told she had to be intubated again, but baby Teagan wasn’t letting that happen!!! Her blood gas test at 4 pm came back perfect 🙌🏻 the added cherry to that was she finally opened her eyes and looked at us, her nanny, Pappy and cousin. Since then her breathing rate has gone down to 60ish breaths per minute and her 8pm blood gas test was great. She is getting respiratory therapy every 4 hours to help with the build up that is still in her lungs, plus breathing treatments. She is being lifted up by all of the love, support, and prayers coming her way. Also, we have to give a huge shout out to her amazing medical team here at Lehigh Valley Children’s Hospital!!! The nurses here are so beyond amazing and really care about her and us.

6/24 Early Update today because she is AWAKE!!!!

Additional Update from 6/24

Thank you for all of the amazing posts!!! We’ve read all of the prayers and well wishes to Teagan💕🙌🏻🦄

Last night and today were definitely the most positive night/day since Thursday morning. Over night Teagan finally began to wake up from all of the sedation🙌🏻 She was very groggy all day...except now she is ready to party 🤷🏼‍♀️ She was on a bipap breathing machine part of the day. Since she did really well with that the respiratory therapist decided to try her on just cpap. After a successful 6 hours or so on cpap, Teagan’s body and lungs needed a little break so back on the bipap she went. Now I have a super sleepy girl on my hands and she just wants to stare at me and not sleep💕 Tomorrow morning she will get switched back to cpap for a while, then hopefully she can go on the cannulas. We asked the attending if he had any idea how long she will still be here, he said until Thursday at least. Teagan enjoyed getting visitors today, and even more they enjoyed seeing her awake💗🦄😃 Can’t wait to see how much progress she makes tomorrow!!!

Update 6/25

Teagan is one sleepy girl right now. She had a super busy and productive day!!! The morning started off with being moved back down to the cpap from the bipap. Her daddy had to go to work today, so it was a Mommy/Teagan day. She had a EEG done this morning, the neurologist came in a few hours later to let me know that she will have to have it done again when she is at her baseline. The only information the doctor could provide us with from the EEG is that there was no seizure activity, so that was great news. After the EEG was done Teagan got to try breathing with just the cannula! She really seemed to enjoy the break from a scuba mask. Someone was becoming a stinky baby, so she got to have a basin bath, I may have had water absolutely everywhere. It was awesome being able to wash her with less wires and contraptions hooked up to her. Oh, sorry I forgot to mention that she had one of the three IV ports removed!! After her bath, Teagan took a nice hour and a half long nap on me😴💗🦄 It was so comfortable to be able to hold her like we are used to.

I’m not sure I mentioned this in the first post because I was still very upset with myself that it happened, but I’m starting to think if it didn’t the tumor may have not been found when it was, so here goes...Wednesday night (night before the seizure) Teagan fell down a set of about 10 stairs in our house. She loved to go up them anytime I needed something upstairs. She would always get to the landing and make a beeline to the spare bedroom that is filled with toys from her cousins, however, she didn’t this time. I stepped pass her as we got to the landing, and as soon as I walked the few steps into the bedroom I heard the thumping as she tumbled down the stairs. She cried for literally 3 minutes before she was off playing with her cousins. For the remainder of the night she was 100% herself, so there was no reason to take her to get checked or to call the doctor. Now, we believe there is a chance if she didn’t fall and then we didn’t tell the doctors this then they may have simply tried to treat her for a febrile seizure and never ordered the cat scan that found a lesion.

Back to why I needed to explain what happened. Teagan’s doctors still want to completely rule out and chance there is an injury they haven’t found, so she had a full body x-ray done today. She did so amazing, all of the staff were so in love with her. She smiled a few times today😁 Two for me and then one as soon as she saw her one cousin 💕 She got to sit up on her own for a little before she started to tire out and needed to go back on the bipap machine for the night. Tomorrow she will hopefully only need the cannula. We are so thrilled with the progress she made today🦄💕💪🏻🙌🏻

Updates will be in the comments since I’m being cut off here