Sweet Zoe Rose

*Please note, the following post is a rather detailed account of our experience with the hospital stay and death of our daughter.*

I can hardly believe I am typing these words. We lost our sweet little girl. She had been doing so well, had even weathered her first cold and ear infection with a smile on her face. Then two weeks ago we took her to the ER after a visit to our ped because she had a high heart rate, fever, cough, and vomiting. The ER doc sent us home after a clear chest xray and said, she has a cold, give her Motrin. A few days later we found ourselves back in the ER because she was not tolerating anything other than Pedialyte on a very slow continuous drip through her feeding tube, still had a fever and high heart rate, and was not urinating. She was admitted due to flu and pneumonia. Miraculously her O2 requirements never went above her home baseline of 3/4 LPM. She didn't feel great, but after a day of fluids and round-the-clock Motrin, Tylenol, and extra breathing treatments she was getting back to being herself after just a few days. Because she was tolerating a continuous feed of her normal formula we were able to come home on Wednesday the 13th.

She had a good night on Wednesday, she slept fairly well and Thursday was a nice day. She napped late in the morning with me and then came out to spend some play time with her sisters. She wasn't 100% back to being Zoe, but we got some smiles and few giggles out of her. Her O2 was still holding steady at 3/4 of a liter until around 1am when she woke up and seemed very restless and in need of a breathing treatment. We ended up giving her treatments every two hours that night, I think she finally went back to sleep in bed with me around 3 for a couple of hours. At which time I did have to turn her up to 1 liter because her sats were hanging around 90% even after the treatment. At 8am it became evident that she was not well, we had her up to 3 liters by the time we got into the car to head to the ER and on the way I had to turn her up to 4 liters...she had not needed this much support since August of last year!

They took us straight to a trauma room, did a chest xray, breathing treatments and put her on the high flow canula at 7 liters. She stabilized, but had a temperature and her xray showed new infiltrates in her lungs...meaning her pneumonia had "blossomed" as the doc put it. They got her down to 5 liters on high flow before we got transported to the PICU later that day. Within hours she had to be put on BI-PAP, which is when we knew things were not going well. They gave her sedation to try and calm her heart rate which had not been below 200+ for hours. Despite the sedation, she held our hands, squeezing my fingers every now and then and even played with my hair like she does when she's trying to sleep. Her sats kept going down and they told us what we feared most, that she would have to be intubated. We had to leave her side for the first time at around 2am Saturday morning. We sat anxiously in the waiting room as the hours ticked by. I knew things were not going well when I saw an RT wheel an oscillator and tank of Nitric down the hall into the PICU.

Finally at 5:30am the doc met us in a family conference room to tell us that she was having a very difficult time. When we went back to see her, it was like I was looking back in time to a year ago, only she wasn't a mere 3 pounds...they had her hooked up to no less than 8 IV drips...including fluids, steroids, antibiotics and I have no idea what else. They had also given her a paralytic drug to keep her from fighting the vent...which they said "you were right, she does not like being ventilated". We held her hands and feet - the few parts of her not intruded by tubes and wires - she was even kicking us...she knew we were there with her.

Around 6:30am one of her RTs from Northside hospital walked into her room. Carolyn had actually kept her alive after her delivery, and happened to be working at Scottish that weekend. She took one look at Zoe's monitors and the vent settings and tears fell from her eyes. She knew what I felt in the pit of my stomach but could not bring myself to acknowledge...the situation at this point was dire.

I'm not sure what time it was or if anything precipitated it, but a quick look up at her monitor showed that her heart rate and bp were dropping, rapidly. No less than 13 docs, nurses, and RTs decended on her bed and brought her back as we looked on through tearful eyes. I have never seen anyone perform chest palpatations on anything other than a CPR doll and it was frightening. Her little body bounced against that hard board like a ragdoll...but they got her back. This time though, there was no pulse ox reading to be found. Her hands and feet were growing ever colder as the blood in her body was flowing to her brain and core organs. Her midsection began to swell as her liver was feeling the effects of all the stuff being pumped into her body. Her skin was becoming blotchy and the doc kept telling us there was no way to know what kind of damage was being done to her brain because she could not oxygenate her blood properly.

One of Zoe's docs from Northside came to be with us as she has been a tremendous source of support and when I called her that morning to tell her Zoe had been intubated she came right over. They talked to us about a procedure called an ECMO (not sure if that's how you spell it) that could be done at the other Children's Hospital nearby. The Cardiac ICU had not immediately said she was not a candidate for this procedure but said if she could be transported they would evaluate her and decide. It was the last thing left to try and save our sweet Zoe Rose. A little while after discussing this with the docs they said they would turn her on her belly, I think because this is how she would have to be for the procedure and they were just trying to by some time as we waited for bed space at the other hospital.

Richard and I were standing outside her room after talking logistics over with Richard's sister when I saw Zoe's doc glance up at the monitor then jump up and run into her room. They lost her heart rate again and began working on her. The doc came out and asked if we wanted them to continue or if we wanted to hold her. We couldn't stand for her to suffer any longer and asked to hold her. They quickly disconnected all the tubes and wires and and shut off the monitors so we didn't have to hear any of the beeps, anymore.

Our sweet Zoe Rose died in our arms that Saturday morning. We held her and rocked her and cried and cried and cried. I kept trying to hold her closer so that the warmth of my body might warm her back up and bring her back to us. Why is she gone? It happened so fast I will never understand it, never. Our sweet, sweet girl who fought so much and won each battle...how could she not have won this fight?

We have been absolutely flooded with words of sympathy and love from those who know us and many who have never met us but have come to know us through this blog or others who do know us. The recurring theme in all of your messages is what a special little girl she is. I truly believe she is an angel and I am blessed to be the mother of this angel. Despite everything she endured, she always and I do mean always, woke up with a smile on her face. She touched everyone who met her, one of those smiles would win you over in a mere second and make you long for those grins and giggles. It is like she knew she was here for a purpose and that purpose was to give small parts of herself to live on in the hearts of all she touched.

In rememberance of Zoe we have set up a memorial foundation - the Zoe Rose Memorial Foundation that will live on in perpetuity to help other kids like her that are born too early and face the many challenges that she faced. To give these kids a chance to live a full and happy life, just like Zoe. If you feel compelled to help us in the quest to honor and celebrate her life you can send contributions, made out to the foundation to 815 E. Spring St., Monroe, GA 30655.

We will be having a memorial service for her on Wednesday the 20th at 2pm at H. M. Patterson and Son Funeral Home on Old Canton Road in Marietta, GA. We welcome any all who wish to celebrate her life with us and we ask that you not wear black. I want the room to be bursting with color just as she was bursting with love and laughter.