Tuesday, March 11, 2008

Carly Has Gone Home To Be With Jesus

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!


Tammy said...

Even though the time was short but so sweet god had a reason for it. Only time will let you know what that was. I can tell that you blessed your life with her presence, and a part of that will stay with you forever.

countrygal said...

Hey there Rachel
I just wanted to let you know we are thinking of you and your family at this time and sending lots of prayers and hugs.


Anonymous said...

I initially saw your pregnancy story on Ehealth. When Carly was born I rememeber thinking what a beautiful baby you had, then I learned what a beautiful woman and mother you are. You were always so positive and inspirational. Carly was (and still is) very lucky to have you as her mommy. I'll be thinking of you and your family during this very difficult time. I've been there myself, so I can relate to some of what you may be feeling. I'm wishing you strength and courage during this very difficult time.

Anonymous said...

Time in life can fly by like the blink of an eye or can pass by as slow as a snail. It's our choice to make the most out of each momment. What I've seen in you, I haven't noticed with many others. Your strength, your being so positive in such a difficult time.. it's truly amazing. Carly was indeed a mirical to begin with, the way she fought is incredible! I fell in love with her from the moment I saw her on ehealth when I joined. A tiny size 6 ring was around her wrist... I remember thinking "what a fighter, a miracle, truly one of Gods best creations." I still feel that way today even though my heart aches to hear of her passing. Rachel you were chosin to have a miracle baby, w/e reasons that is, you will know, already know, or will know in time. Carly is with Jesus & God, (not that I need to tell you), and she will forever be waiting for you Mommas! Rest in peace Carly. Rachel, no words can express how you really feel or for me, how I feel. Your story has touched me in ways I can't explain. God bless your family. Carly, you fought well angel, you beat a lot of odds for soo long (least as far as I'm educated), and don't worry because you WILL be with your Momma in time. I know in my heart your already there sleeping by your Mommas head, waiting for her. Your Momma will be there for you in time and I know you will be there with open arms. Rachel... your amazing... least I can say.

Crystal Gauthier said...

I can imagine the pain you have been through, what every mother fears. She will live in your heart forever! You have so many beautiful pictures and videos to remember her and honour your strong little fighter. She is absoulutely beautiful! My heart broke for you and I can't seem to stop crying for you, if you were in front of me, I would hug you!

May God bless you and wrap you in His arms of love!

Anonymous said...

I fell upon your site and read your story. I am in tears at my desk! Wow - the love you had for your baby is amazing and evident. I want you to know a stranger is thinking about you and praying for you;)