Our new life unfolds....

As we were preparing ourselves for the ambulance transfer on Monday, we all sat glued to her sat monitor as NICU parents do...watching the oxygen go up, go down, listening to the beeping and usually knowing how to work the monitor better then some of the nurses and techs! Not only were our eyes glued on the O2 numbers, but the heart rate as well. Preslie's resting heart rate was steadily getting faster...resting heart rate about 150 and hitting 203 at one point. When we first arrived at the hospital, we knew her lungs were going to be a concern - they always have been, much more so then her heart. Preslie was born with an ASD - a small hole between the two upper chambers of her heart, but the hole never really posed any problems for our angel and last May, at her last ultrasound with Cardiology, they had believed it was all but closed. Monday morning the pediatrician came into our room to look over Preslie and not only were her continually decreasing sats a worry, but the doctor said she could hear a murmur and the right atrium of her heart looked enlarged on the xray taken in the ER 2 nights before. Odd, I thought, the murmur shouldn't be there if the hole is closed....and even more disturbing, part of her heart is looking enlarged - NO ONE has ever used enlarged and Preslie's heart in the same sentence. The doctor shrugged her shoulders once again, adding to my anxiety over my daughter and my desire to get to the other hospital - NOW.



Resting in the long, boring ambulance ride to Texas

Two hours later after a very long, boring ride in the ambulance a real hospital awaited us - UNM- in Lubbock, Texas...the feeling was different in this place. Sure, all together, hospitals are not usually happy places, but they CAN be places of hope and progression...places of healing and peace....none of which we had felt in several days.

We got settled into our room late that night, O2 monitor in place, our suitcases piled in the corner, nurses and techs coming in to do all the traditional meet and greet and finally around 10 the pediatric team came to meet us and spend some time with our Miss Preslie. After reviewing her medical history, he attempted to do an exam, but Preslie was done with doctors, hospitals, monitors and the now feared 'white coat and stethescope' that she anything but cooperative. You could tell by his questions and facial expressions that he wondered all together why we were being admitted instead of just being sent home: 'We'll keep you tonight and hopefully if she's turned a corner, then it will be just for observation and you can probably go home in the morning.' I nodded in agreement, simply so kurt could start his 2 hour drive back to Hobbs and Jaden and I could try to get settled and maybe even catch a dream or two. But I knew deep down that a doctor he may be, no rarely do they know better then mothers! I knew something else was going on with my baby girl and I warned them the get the cannula's and oxygen ready! Similarly, then also nodded in agreement!

Sure enough, shortly after my sweet angel dozed off, her sat monitor was going crazy and she was straight down to 81. Thankfully the nurses didn't let it go any lower and they were surrounding her bed ready to place cannula's in a very tired, very confused, very scared little girl.

It has been 8 months since Preslie has had cannula's in her nose, so at first attempt she would rip them right out and start her relentless fight. I stepped back and let several nurses get the job done because I knew no matter how much she hated those tubes in her nose, it was those tubes that were going to save her, that were going to keep this from getting much worse. They finally had to tape her hands to little paddles so she couldn't grab at her face or the tubes, but since my little girl is 'delayed', she didn't understand that any better, and that sent her over the edge. For the next 2 hours she fought, me, the nurses and anyone that even tried to get close. She threw her head back, hit at her face and the sides of the crib....where was my little angel, what had all these tubes, hospitals and illnesses done to my sweet, precious baby. I held her, I rocked her, I left her alone, I put her in bed with me, I climbed in bed with her...but nothing would calm this terrified little girl. It was the hardest night of my life, to watch and truly understand how it must feel to not understand. She was so sick...her cries weak, her tears non-existent from lack of fluids...her fight strong, her determination unlike I have ever seen, and her trust in anyone and everyone gone! I had to stop her from hurting herself, from hurting me...I finally wrapped her blanket tight around her arms and held her tightly in mine, singing the song I have sung to her since birth - weeping in the dark, I held my baby girl, singing in her ear until we both fell asleep....



Miss P, confused and exhausted over these horrible paddles on her hands!

The day began just a few short hours later and not only did I awake exhausted, but broken as well...my spirit torn in two, having watched my little girl so scared the night before. My sweet Jaden was remarkable - sharing that pull out chair with, not only his mom, but his baby sister as well...listening to her cries and fighting, beeping monitors and nurses...realizing it was going to be a fight just to get some sleep. He was better then I ever expected him to be, stuck in a hospital 2 states away! 

Jaden: my witty, strong, sweet, understanding little boy!

Tuesday was filled with more tests: more blood draws, xrays and attempted ECHO without sedation - ended before it even began when Preslie threw her bottle at the radiology tech. How on earth are you going to do an ECHO on a 2 1/2 year old that is sick, doesn't understand what you're doing, has been poked, prodded, transfered, been fighting high fevers and is hundreds of miles away from any sense of normalcy at all...but once again, I nodded and let the tech catch her bottle, then politely said 'I told ya so.' We were then wheeled back up to our room and spent the afternoon waiting - waiting for Kurt to get off work and come back and see his baby girl, waiting for Grandma to finish her 16 hour drive and join us in Lubbock, Texas, waiting for some answers, and now waiting on the pediatric Pulmonologist.



My sleeping beauty...finally resting!

Kurt arrived as quickly as he could after work and the 2 hour drive he had, Grandma was on her last leg of the drive and would be with us later that night - able to free Jaden of this prision he didn't choose, be a familiar face to the rest of us, be my 'mom' in my time of need...and the Pulmonologist finally made it to our room for a very long, very thorough visit....she came to our room with a whole new set of circumstances, new ideas, a NEW DIAGNOSIS for our Princess - yet again! :(