I was finally allowed to leave the hospital first thing in the morning! We rushed over to Children’s Hospital…I walked into a whole new world… the world of the NICU! I finally got to go and be w/ my girl! The most beautiful sight I have ever seen! She was amazing! She was so tiny… at birth she was 5lbs 12oz…. she was now 4lbs. 1oz. She was covered with tubes, and wires… monitors were beeping all around me… I was scared… very, very scared! I was afraid to touch her, afraid of every beep! She looked so pitiful just laying there… I just wanted to scoop her up and hold her! I just sat and stared at her…. and then I began to meet these amazing human beings…. superheroes, that I never knew existed… they were NICU nurses, respiratory therapists, pca’s, clinical staff, HUC’s, child life, dietitians, social workers, lactation consultants, nurse practitioners, and gobs of docs… gosh I’m sure I’m forgetting someone… but I met them all! It was a whirlwind… but unbelievable to have this whole team of people who were all working so hard for our girl! They told me at this time she was doing amazing! And if things went well she could be home by Thanksgiving!!! At the time that seemed so far away!!! But looking back… a month and a half would’ve been a piece of cake!!!
We waited in a small room in the hospital… having no idea if Lilee was still alive. We had no idea if we should mourn because she was gone… or if there was still hope that she would be ok. We had so many questions…. but all we could do was just sit and wait. It was pure torture! I wanted to leave the hospital… to go with her… I should be there too!!! But I wasn’t allowed. Luckily her Dad was with her by her side during this time. During that time waiting… I couldn’t have even imagined what she was greeted with upon entering Cincinnati Children’s Hospital. I now know that she was greeted by the most amazing human beings that exist on this earth! Loving, smart humans that scooped her out of that incubator… and immediately began taking measures to ensure she would get to see her Mommy again. From what I’ve heard the report they got was that she was VERY sick…. and they didn’t really know what to expect… I don’t think anyone thought she was going to survive… But she had one of the best nurses, and a team of RT’s, and doctors working diligently to give her the best chance of survival she could have!
Finally…the phone rang! I couldn’t tell you who it was… if it was a nurse, the surgeon… but they needed to get my consent for surgery….! She was still alive!!! Of course… do surgery! So the waiting game began again… I had no clue what they were operating on… what they would find… but I finally had a glimpse of hope… I realized that this baby was a fighter!
Her surgery was at 11:47pm… it lasted an hour and a half…. we waited, and waited, and waited…
The phone rang again in the very early hours of the morning around 2am… It was her surgeon on the phone! The man that would prove to be her guardian angel multiple times throughout her life! She had survived the surgery!!! She was alive… She did have a perforation in her intestine… which caused an abscess…. and that is what caused her to be very very sick! He removed the abscess… and she was resting comfortably, and was stable!!! My baby girl was OK!!! Again happy tears! I felt like these last couple of days I was on a roller coaster of emotions… we would all cry b/c of devastating news… and then we would cry b/c we got wonderful, encouraging news… up down, up down…. it was exhausting… It was unbelievably hard to be away from her for the next hours… but this momma needed her rest….. because we were about to embark on an amazing journey!!!
17 years ago… at 445am my water broke!!! This was definitely not the plan! Lilee was ready to make her debut! Well in about 14 hours!!! I had my amniocentesis… and we waited…. Finally… right before I was supposed to start pushing… they came in to give me the results of the amnio… She tested negative for CF, and Down Syndrome… I’m not sure whether it was because I was so young and dumb, and had no clue what a perforation in her intestine actually meant… and didn’t realize that just because she didn’t have one of those chromosomal disorders… she still would be REALLY sick…. I put all of that out of my mind! I even remember telling the nurse… whom had been caring for me all day… “Did you hear??? She’s going to be OK!!!” Well… at 6:27pm… my world was rocked… my heart was broken! Lilee was born… but she was most definitely not fine!!! She was not crying… She was grey… She was lethargic… Her abdomen was so distended… you could see little veins all over. They let me see her for a split second… I held her on my chest… but knew she should not be there… she needed help… and she needed it now!!! They took her away in a panic… and then we waited.
I waited for any type of update… but no one would tell us anything… I had no idea if she was alive, or had died… was she going to be ok??? So many questions… and all we could do was wait… hope for the best… but after what I saw… I knew it was bad!
Finally, they brought her into us… she was in an incubator covered in wires, and tubes… They were not positive that she would make it for the drive to Children’s Hospital, so they wanted us to see her and say our goodbyes… just in case… Her Daddy baptized her with holy water from the chaplain… we said our goodbyes… and then she was wheeled away.
I was left with really no hope. She was too sick… this was bad… really bad… and we all knew it. I was left with these two pictures… printed out on computer paper…. When you have never really seen a “sick” baby… when you have never seen a baby with breathing tubes, or IV’s… these images were the scariest thing EVER!!! I just kept staring at them…. But it is an image that was so hard to see….
I was surrounded by all of my family and friends… they were there to talk with me, to cry with me… to just sit there with me and wait for any bit of news… I had messages from friends/ phone calls… even had Foley’s delivered with encouraging notes written on the styrofoam containers… Lilee had a fan club… an army of people and their prayers with her…
I hope she knew how loved she was… I am pretty sure she knew… and that is why she was such a fighter!
I was 21 years old… working at a daycare, while going to school full time to be a teacher. I had wanted to be a teacher for as long as I can remember. I was 32 weeks pregnant… and I was HUGE!!! I went into work like any other day… not feeling great… but I never felt great at that moment. I was especially dreading this day because I knew that I would have to stay late for a required CPR/ First Aid training. I had told some friends at work that I wasn’t feeling great… that I hadn’t felt the baby move much throughout the day. My coworkers urged me to tell the nurse that was teaching the course what was going on. I decided to take their advice… and I’m so thankful that I did. She told me that I really needed to go to the hospital right away! Thank god she was there… and I listened to her advice… If I would have waited much longer… who knows what would have happened. When I got to the hospital they immediately did an ultrasound, and found 1. That she was a she… and 2. That she had an obstruction in her intestines. They told me that often times when babies have an obstruction in their bowel they possibly have cystic fibrosis, or Down syndrome. In my 21 yr old scared brain… I heard, “your baby has cystic fibrosis or down syndrome!!!!” I was scared, sad…. afraid of what the future was going to be like for us…. but then I accepted it…. w/ the support system I had…. I could handle anything life had to throw at me!
I was scheduled for an amniocentesis the following morning… to do genetic testing… and get a clearer picture of what was going on with baby girl… At the time she was in no apparent distress… and then we would be discharged to wait for the arrival of baby girl!!! …..
