Another day, Another Doctor

The last 24 hours have been pretty eventful. Lily's two top teeth are cutting through, which makes for a pretty cranky little girl. She also had some reflux issues last night. She vomited blood a few times. Needless to say, we didn't get to much sleep last night.

This morning she had physical therapy, followed by a G.I. appointment. Therapy went well, as usually. She has a great therapist. Today we worked on her upper body, neck, shoulders, etc. She tends to get extremely stiff and extends  her arms so much they turn in. This is not helping her accomplish some of her goals, i.e. reaching for toys, holding toys and such. We are currently working on getting her an occupational therapist to work on these things more. We also work with her on tummy time and sitting. Visits to the G.I. are always fun. We left with a referral for an x-ray of her belly to make sure her GJ-tube hasn't moved into her belly and for a urine culture. On a good note, she is gaining weigh pretty well. She is at 11 lbs 8 oz. She has gained about 2 lbs this last month.

Tiny Lily in the NICU 

This little person has had more X-rays, ultrasounds, urine cultures, hospital visits, doctor's visits, trips to the lab, and taken more meds in her 9 months 1 week of life then I have in 26 years. Who imagines this  life for there child ? I'm constantly reminded of where Lily should be developmental wise for her age. Some days it doesn't bother me, other days it's heartbreaking. I never imagined while I was pregnant that life would have taken us here. 

Relax

My husband and I do not and will not just leave Lily with anybody for any reason. She is not your typical 9 month old.She is not bottle feed, but by pump through a GJ- tube. She also is on continuous feeds meaning she gets fed 20 hrs a day. Sound easy ? Sure if you know how to work the pump, and make her formula, give her meds, know when she takes "breaks", clean out her bag and tube, connect the tube to her button and repeat. She also has severe reflux and chokes on her saliva, so she is constantly coughing and choking. She pretty much waits until fight or flight kicks in to take a breath alot of the time. So yea, I am a nervous wreck when I leave her. I get anxious, paranoid, and imagine the worse. All of that is just icing on the cake.


Last night we decided to drop Lily off with my mom, so we could go hang out with a some friends. While hanging out, I was told to relax, enjoy myself. Relax ? Enjoy myself ? I'm ALLOWED to do that, right? wait, Can I do that? Apparently not. It was obvious to others that I was a bit anxious, ok alot anxious.


I haven't been able to get this outta my head at all. Who is this super tense person, who can enjoy the moment? Not me! I'm super chill. I love having a good time and chillin' out. I'm 26 years old for heaven's sake! Did this use to be me? Am I a changed person? UGH...I liked who I was dammit ! I don't wanna be that person. Maybe I just need to learn how to adjust from my old super easy stress free life, to my my life with moniters, G-tubes, hospital stays, therapy, and knowing more medical terminology then I ever cared to, Or maybe I just need a Xanax !

Lissen-sa-what....

Your daughter has Lissencephaly, her brain is smooth. That's all I remember the doctor saying,as my mind went blank.I can't even remember exactly how I felt in that moment.I watched the nurse hand my husband a few pieces of paper they printed off of the NINDS website.
http://www.ninds.nih.gov/disorders/lissencephaly/lissencephaly.htm

I remember Bryan asking the Dr. if this is something that would affect her for the rest of her life,her answering yes and then walked away. After fighting my tears for a few minutes, her nurse handed me a tissue and said your daughter is obviously very loved and for that she is blessed....Blessed WTF do you mean blessed ! She handed me a tissue and says when you are calm you can hold your daughter.HELLO I want to hold her now ! So I wiped away my tears and held my little 3lb 9oz baby girl.

We headed home not to long after that, seeing that it was Thanksgiving day and my mother was at home cooking away.When we got home, we went right to bed , held each other and cried. I didn't even care that is was Thanksgiving. I couldn't eat anyways. After awhile we got up and hit google pretty hard. Since we didn't really know what we were looking for, we didnt find very good info. Everything pretty much said your daughter will not develop past a 3 month old, then die before she reaches two years of age. 

Lilyana Bryleigh is now 9 months old and pretty damn heathly considering. Our daily lives consist of Dr. appts, therapies and the occasional hospital stay.