As you all know Carly hasn't been filling good for a couple of days now. Well with all the testing that they did it all showed she was as healthy as could be. But I knew something was wrong with my baby girl. They did an echocardiogram to find that she had severe pulmonary hypertension. They were gonna give her nitrous oxide and Viagra to help with the pressures but noticed a heart defect in the meanwhile. They said the meds would cause the condition to get worse so we opted out for the meds. Well over time things progressively took a turn for the worse. The ventilator was on the highest setting (they were afraid that one of her lungs would pop)and she wasn't responding to it, so they put her back on the oscillator and she didn't like that at all so it was back to the conventional vent and then they did wind up adding the nitrous oxide just to help some with comfort (not sure what all that meant) she was placed on a type of medicine that paralyzes her body to keep her from fighting against the vent. She was also given a continuous drip of pain medicine to take away all her pain. I got to hold my sweet baby in my arms and love on her and talk to her. We held on to her for about 6 hours. By this time all of her family and friends had came to pay their last visits. We asked everyone to step out. Once the room was clear Dr Chu came over and helped the nurses take off the leads and wires. She first turned off the vent before removing her breathing tube. Everything was removed all but her IV for pain meds. I put her on my chest...the way she LOVED to be held and rocked with her and talked to her. I knew she was already gone but I wanted to keep holding her. I gave her lots of kisses and lots of love. I called Dr. Chu over to check her and she called the time of death at 1am. Once this had been called we had the IV that was giving pain meds removed. Now I have my baby without ANY wires or tubes! This was one of the hardest things I think I've ever had to do. I sat there and held this dead child that I brought into this world weighing only 13 ounces and basically watched her first lashes, fingernails and bootie grow in! It was hard to believe that the baby I was holding was my baby. So lifeless. I held her for a long time before letting her go long enough to get her last bath. Her Nurse Patti who loved her SO much came to help with her bath. And her daddy helped to. This was hard to bath and dress my baby knowing this would be the last time. We got her dressed very pretty and I got to walk her across the room. I've NEVER been able to walk my daughter any where, not even 10 steps away. SO this was nice to be able to walk with my daughter in my arms. We sat down and snuggled some more and allowed family to come in one at a time to hold Carly for one last time. After everyone was finished we took her back and laid her in her bed. We removed her pretty dress (she would us this for burial) and put a onesie back on her. We also took more pictures and got her hand and feet prints again. I laid down there with he as much as I could on the small open warmer they had her on. This was the hardest part of all......walking out of the NICU. Knowing that this time I not just leaving to go home go to sleep and return in the morning for a new day. This time I'm walking out of those doors forever. I had my last kiss, my last hug, my last every thing my last holding of hands, my touch, that is the last touch before the funeral home adds all their makeup and stuff.
Carly was a fighter. She fought from day one when the doctors said that the breathing tube wouldn't fit a 13 ounce baby, she proved them wrong!! Go Carly! When she had pneumonia she fought through that not even weighing a pound, she fought through 2 bouts of e-coli sepsis. She fought even when she had a broken leg, she was a trooper though out her eye surgery and proved to us that she wasn't gonna keep that stupid vent that she was a big girl and wanted her high flow back! Carly had many blood transfusions and a spinal tap. Several ultrasounds and x-rays. Through all that it didn't get her down or weaken her tiny spirit. She was one strong cookie!
I loved Carly with all my heart. I don't think I've ever know a love so real.I watched this angel grow and develop before my eyes. She's amazing. I remember the first time I held her. Still only 13 ounces Nurse Patti asked me if I wanted to hold her up off of her bed long enough for her to change her sheets. I did and was overwhelmed with joy. It was an amazing moment. The first time I held her TINY had I just cried. She felt sticky like a little tree frog. We had lots of good times together. I got to give her baths in her bed, and one day Nurse Melissa talked my into pulling her out and putting her in a tub without her leads! Talk about scary. But it was nice. Even though she pooed every chance she got....yes even in the water!
Seeing her finally come off the ventilator and on to cpap was nice. I was extremely nervous and stayed there all day for 6 days. That looked like the most uncomfortable contraption on her her. Then she graduated to the high flow nasal cannula where she did great! Not much longer she was big enough to start dressing and I put some of the cutest outfits on her! I LOVED to dress her. Then it was off to the NPCN for the 2nd time. She got to know some nurses that were really sweet. We got to take her out for her weight every night. I loved it because I could get to her face and give her kisses and talk to her and tell her how much I loved her. She got to where she would let out the small cries when she was out there. It was kinda cute. Well it was almost more like cues than cries. But cute none the less. The NPCN was nice and quite and I held her a lot in the past weeks before her return home. She was starting to do big things. She was starting to hold her head up, she was turning her head from side to side in a laying position and moving her hands and arms more. She had started tracking things and people with her eyes. And in her last few weeks she had gotten really perky and was awake a lot and you could at times see her smiling with her eyes. Carly was a true blessing. I'm so glad God has given her to me for the amount of time He has. I know know a different kinda love! A love that I'll NEVER forget. She was an absolute joy. I looked forward to seeing her everyday and every night! And now I'll look forward everyday and every night to that day coming when we'll meet again!